Friday, 8 December 2017

Another battle

Below is a letter I have written as part of my invalidity pension appeal.

Yet another denial. Yet another fight.
It's exhausting.

Ive been trying to write this for 2 weeks but yesterday I made myself sit down for 2 hours to get it done. Big deal I hear you say.
Since yesterday afternoon I've been in hell. I was  awake all night in pain, no medication would work. I finally got  to sleep at 5 this morning. Today I've been bed bound in the dark with a migraine threatening but unable to tolerate any  light.
I'm finishing this in my pitch black room and screen dimmed  with additional screen dimmer app.

Anyway it's important to show people what we go through every day. I know I don't verbalise it, I hate listening to myself moan, like you all I keep it in, sometimes I'll vent to my partner or good friends but for the most part I remain invisible.

So Here goes........

My life has been TOTALLY changed by Fibromyalgia. The consensus is that I am a severe case and I cannot argue with that. It might help if i go through my symptoms from top to toe as the effects are that all encompassing.

Please bear in mind I was a highly qualified and respected ICU nurse with 20 years experience, applying for invalidity pension is not an undertaking i take lightly, but it is also essential to be recognised for the life altering condition it is.

So top to toe this is what I deal with DAILY.

Head:  

Cognition.  My mental capacity is greatly reduced.  This very document has been weeks in the making. Thankfully on a computer it is saved as i go along and has a spell check.

I struggle to put sentences together, word recall is greatly reduced, meaning i just cannot find the right word and will often go totally blank. I forget what I was saying or even thinking.  

I have zero ability for numbers now, Zero.  My short term memory is severely affected. I have reminders for reminders, if i don’t act immediately when a reminder goes off i will forget, this has a HUGE impact on my daily life. Medications are forgotten regularly if I dont take immediately when reminder goes off.

Central Nervous System (CNS).

It is not really known whether Fibromyalgia is a disorder of the CNS but from my own experiences I would suggest it is,  My CNS is overamplified, in a continued state of fight or flight.  Trying to "dial this down" is a huge undertaking and exhausting in itself.

Under the CNS umbrella comes a good few symptoms.

Allodynia - I experience PAIN where “normal” people wouldn’t even notice.  I have to wear clothes a size bigger and inside out as labels and seams hurt me.  Creases in bedding feel like knives, heaven forbid a crumb in the bed as that feels like glass. A hug from my child is received with a grimace because it hurts, him sitting on my lap hurts. The cold hurts. Heat hurts.

I’ve a symptom that can only be described as feeling like I’ve open wounds on my legs, my entire (not insubstantial) thighs on top, are deep throbbing wounds.

I get daily flares that feels like I’ve an all over sun burn, I cannot be touched and clothing is extremely painful. My scalp is always painful, my hair hurts. I have had parts of it shaved off before and now considering all over shave as scalp is so sore. If it wasn't so cold I probably would do it without hesitation but the cold already hurts my head.
The pain in my scalp can escalate to feeling like I've been stabbed in the head, when this strikes it renders me incapacitated, unable to move my head at all, I have to just wait for it to pass. I'm waiting for neurology appointment query Trigeminal neuralgia.

Hyperalgesia - Amplification of a “normal” pain response.  You may feel discomfort, I feel intense pain.

Intolerance to noise - This can be as simple as the fan on my laptop that is getting to me right now.  Normal household noises, the fridge buzzing, the tumble dryer, you name it can set me on edge.  Leaving the house and being exposed to the cacophony of noises, that most people don’t even notice, will cause me intense distress and “amp up” my already over stimulated CNS and as a result increase my pain and anxiety.

Intolerance to light - I wear sunglasses even in dull light. Screens have to be dimmed, using an app that will dim beyond a device's capabilities. Light WILL cause eye pain, a headache, if not a migraine. Fluorescent lighting WILL cause a migraine.  In actual fact the discharge summary from Harolds cross hospice that stated they hoped for a return to “some form of employment“ omitted the fact that I was rendered bed bound due to migraine caused by the lighting in the hospital and had to stay for a 3rd week just to get more therapy time in, however i had to leave 2 days early I think it was because I literally could not face the continuous migraine.    

Multiple Chemical sensitivities. - This includes food (I am still working out what foods will trigger flares, the list is extensive so far), household agents, but most importantly and overlooked Medications! Pharmacological drugs often prescribed for Fibromyalgia cause extreme side effects in me.  Pregablin and Gabapentin caused dramatic cognitive issues, I was unable to even put days of the week in order to put my medications in its organiser. I was unable to hold a conversation. Amitryptiline I can only tolerate a small amount as it zombifies me BUT i have to take a small amount as it Dampens down my skin burn and the aching feeling of open wounds.

Opiates cause multiple side effects. Basically any pharmaceutical will trigger an adverse reaction of some sort.

Migraines - these are debilitating by themselves but in addition to all the other symptoms I am listing causes extreme distress.

Eye Sight - My eyesight is deteriorating rapidly.  I have constant double vision, under investigation currently by Opthalmologist, probably caused by a 4th nerve palsy meaning my eye muscle does’nt hold its position.  Glasses with a prism mean I am able to at least see but only at specific distances and with enlarged text.

Body:

Neck - Painful and stiff joints

Shoulders - Painful to move and intense pain when sleeping on sides.

Arms - My strength is reduced, my arms fatigue very quickly. Washing myslef in shower, washing my hair, drying my hair all these activities have now been reduced dramatically as I am unable to tolerate the pain or fatigue caused.  I used to shower and wash my hair daily.  Now twice weekly if I’m lucky to have the energy. This fatigue is more global than my arms however.

My Wrists are painful and weak (I am unable to lift a full kettle), My fingers are painful (I cannot grip a standard pen and even using my fat special pens hurts). Even the sensation of fingers hitting buttons to type causes discomfort.

Back - Painful from top to bottom, can affect breathing and cause sciatica.  I need to use Heat pads, pain killing gels and balms frequntly throughout the day.  I often have to get up in the middle of the night to sit on my Gym ball and try stretch the spasms that happen frequently.

Sacrum - Sitting on uncushioned or ineffective cushions causes intense pain that will radiate up my spine. I am unable to sit for long periods, car journeys (passenger only) even with a cushion will cause pain after 20 minutes.  This means that any trips anywhere whether for hospital apts or leisure are ALWAYS painful. Add to the journey the waiting times in hospitals, it progresses to agony.

Legs - I touched on the pain felt in my legs above but I cannot describe just how distressing this is.  It will make me feel like I’m going to vomit if touched. The pain often makes me feel sick but thats a global thing.  I am unable to walk unaided apart from pottering to the loo or around the house in short stretches. I cannot stand for any period of time.  I use a walking stick on a good day and then will use a Rollator, Wheelchair or Mobility Scooter dependent on how bad I am that day.  I feel pain in my hips due to recurring bursitis, in my knees, ankles and even the soles of my feet from the weight of my own body. My legs tire very quickly and as a result of both fatigue and pain my mobility is severely limited. I can only manage the stairs in my home once a day, I can get down but the pain and sheer effort to get back up the stairs is more than I can handle.  

Organs

I’ve discussed my eyes above but all of my internal organs are affected. Hyperalgesia means that i can FEEL everything.  Even ovulation causes pain.  Every month I'm rendered bed bound with my period pains.
Recently I had some lung congestion that felt like I had broken a couple of ribs. 

Psychosocial

Since my decline I've become a shadow of my former self.  It's impossible not to be depressed when you're in constant pain.  Facing the loss of your identity is a huge factor.

The constant need to explain and justify yourself is exhausting.  

This ongoing judgement also eats away at any self confidence you ever had.  

Now I suffer with extreme social anxiety.  I cannot handle busy places. The looks.  The judgment.  This extends to phone calls.  I basically don't answer calls, I let my voicemail screen them and can only listen to messages when I'm prepared.

This means that things like this get put off because of the anxiety that builds in anticipation for the judgements ahead.  Being refused things because “I don't look sick“, because my disability isn't obvious.  I'm not missing a limb or dying. Another battle faces us in January when we appeal the motability denial

Daily life

I wake every day,  EVERY DAY, without fail,  in pain.  

Before I even open my eyes I feel pain.  Sometimes it's more than I can cope with to turn over and take my morning painkillers.  So I lie there in pain,  with a painfully full bladder,  willing myself the strength to roll over and sit up.  

Inevitably I have to go to bathroom before these painkillers kick in, so I hobble.  Pain from the soles of my feet all the way up my body just walking to toilet.  

I am unable to get up with my son. Unable to get him breakfast. Unable to get him ready and take him to pre school.  

I am in fact only able to “do the stairs” once a day.  Sometimes I can't even manage that so i am stuck upstairs,  in bed,  dependent on my partner,  my carer, for food and drink.  

While my son is at school I'm usually trying to sleep.  My sleep, although better thanks to CBD, is still broken due to pain.  

I plan my day from there.  Can I face a shower?  Can I wash my hair?  The act and then the recovery afterwards needs to be considered.  Using baby wipes and dry shampoo is my daily routine.

I try to be up in time for my son to return home from school.  When downstairs I spend the majority of my time in my riser/recliner. I have a perching stool in kitchen to allow me to rest at work top to make drink or my sons lunch.  

My partner does ALL of the house care.  Shopping,  laundry,  cooking,  cleaning,  you name it.  

I try to help prepare or cook dinner by sitting at cooker stirring food or the like.  

Come 5pm I'm in so much pain and so fatigued I must go back upstairs to bed.  

Then it's a case of trying to play with and settle my son for the night.  If anything is needed from downstairs then is either my partner getting it or going without.  

I’m not sure how else to describe to you that just living my life on a day to day basis is all the “work” I can handle.  There is no treatment available** or even test to diagnose this horrendous illness. So we are forced to fight and justify our very existences.  

Comparing daily life to the bubble of existence experienced in a rehab hospital is like comparing night and day.  There is no comparison.

**Treatments that have been shown to help but not accessible freely.

Hydrotherapy - all public pools I have tried are too cold and make my symptoms worse.  Private ones are always accessible and cost money I do not have.

Hyperbaric Oxygen Therapy - research suggests that this can be helpful for pain and fatigue.  Costs €100 per session in Dublin.

Cannabis - I do use the legal version CBD which I am lucky has helped me not need my opiates and sleeping tablets. But research shows that a level of THC helps with pain control, this is of course illegal.

Physio, osteopathy, chiropractic are not an option as I cannot be touched.

That's where I end it. I hope this explains to the deciding officer the extent that this illness has on me.

Sharing this blog will help us get the word out and help the invisible become visible.
#invisibiltyhurts

Thanks for reading and gentle hugs to all ❤❤❤❤

Thursday, 9 November 2017

Medical Cannabis - The Dàil Debate

Wow what a day!! I warn you, grab a cuppa and get comfy because it's a long one 😘

So today was the first time I've been to any sort of Parliamentary debate.  I just HAD to brave the pain, and suck it up buttercup, to go today though.

A lot of you won't be familiar with what is happening with regards to medical cannabis here in Ireland.

Last year Solidarity PBP TD Gino Kenny presented a bill before the Dàil and there was much fanfare and excitement as we all got prepared for Cannabis to become legal and a viable treatment option for so many of us.
Little did we know that this would be thwarted at every turn.

Roll on 12 months. Back in the Dàil to be debated again.
Why? You may ask....(now here I hasten to add is MY interpretation of the days events and those of the last 12 months)
That original Bill was put forward for review by a committee consisting of TDs from the main party's and also a medical committee (HPRA) looking into the efficacy of cannabis as medicine.

Both of these bodies deemed that
A. The bill was not fit for purpose and that
B. That there isn't enough evidence to support the use of Cannabis for numerous medical complaints.

(There were more objections but I don't want to keep you for hours.)

Before you all shout at the screen...I KNOW!!!

No evidence my backside! If someone wants to put some money into double blind randomised trials I can tell you wholeheartedly that the results would scream in our favour.
However this to date has not been done ENOUGH.

We all know who makes money off the sick, they stand to lose out big time by the legalisation of medical cannabis.

Peer review and anecdotal evidence isn't enough it seems.
Just because Joe Bloggs says something, doesn't make it so.... But how about thousand, millions even, people, the world over,  saying it's so???

Another argument that was brought up was the age of "reefer madness" crap about Cannabis being a "gateway drug" and it "causes psychosis".
In the last couple of years I have learned an awful lot about not only fibromyalgia but also cannabis and it's potent cannabinoids.

Here is my take on both of those statements.

By keeping cannabis a schedule 1 drug (which by the way means it has NO medicinal value) and criminalising it you are keeping the drug dealers in business. They make their money selling low CBD high THC cannabis.
CBD along with another 100 cannabinoids (inc THC) have something effects on various health issues.
THC is the compound that gives the high.
We do not want Street weed legalised. We want access to cannabis that is not only the right strain but also the right ratio of CBD:THC that is right FOR US.

For example I use CBD daily. It has allowed me to drop a lot of my pharmaceutical drugs (which by the way DO KILL, DO CAUSE HORRIFIC SIDE EFFECTS, that is proven and yet they're still legal). I'm a HUGE advocate of it having seen the benefits first hand. What we know though is that for a person to get the very best from a treatment that a small amount of thc is needed to provide the "Entourage Effect". The amount of THC needed varies from condition to condition and from person to person. I for example cannot tolerate THC unless it's tiny amounts.

I have NO interest or intent to proceed into other drugs. I just want to be able to have some quality of life!!
Those of us who need medical cannabis just want relief from pain or to be free of the pharmaceuticals that are slowly killing us. Gateway my bum!

Regards the psychosis argument. This is something I remember from growing up, the links between cannabis and schizophrenia for example.
Again I draw you back to ratio and more importantly an individuals predisposition to mental health issues. I know plenty of people now who are successfully treating mental health problems, yes even psychosis, with cannabis.
They need lower levels of thc, this is why we need legislation and regulation! Not a ban altogether!!!

This brings us back to today.
A lot of TD''s wanted to be heard today which is great, lots of support for the bill, (which up until yesterday was looking at getting thrown out) from parties that had been involved in its bring rejected at committee... Suddenly an 11th hour turn around!!! Power to the people me thinks!! Public opinion is so very strong there would have been extreme backlash from the Irish public had it been thrown out today.... But I digress....

Today saw excellent arguments for the bill, particularly eloquent and powerful was Deputy Richard Boyd Barrett who said the following:

"In December of last year, this House made a unanimous decision to send the Cannabis for Medicinal Use Regulation Bill of Deputy Gino Kenny to Committee Stage. Shamefully and disgracefully, a joint health committee, comprising members from Fine Gael, Fianna Fáil, Sinn Féin, the Labour Party, the Rural Independent Group and some other Independents, has ignored the opinion and advice of the Irish Medical Organisation, which represents the doctors, Professor David Finn, president of the Irish Pain Society, and Professor Mike Barnes, who produced the definitive report on the issue of medicinal cannabis, and it has recommended that the Bill not proceed to Committee Stage. I would like to know, on a matter of Dáil procedure, what standing the recommendation has. It seems that if the Dáil completed Second Stage and agreed to send the Bill to Committee Stage, it has to proceed to Committee Stage or come back here for a decision to be made to reverse it."

The nay sayers to my mind ended up looking like heartless uninformed eejits. These people wanting to reject the bill progressing to the next step because of what boiled down to the changing of some wording.

The utter lack of respect shown by Minister for Health Simon Harris and Kate O'Connell angered me immensely.
The minister does support the argument that the people need access to cannabis, but at the same time closed minded on HOW this might work. Kate O'Connell was a disgrace. Her flippant attitude and lack of knowledge on the matter was insulting. This topped off by the fact neither of them saw fit to remain in the Dàil for the entire debate!! This showed a great lack of respect not only for the TD's present for this debate but also US the people, the patient to whom this means a great deal.
Anyway next step is vote as to whether the bill progresses any further.  Date for Vote is next Thursday 16th November I believe.

Please, I implore you, make your voice heard. If you are the potential patient speak up! If it's your loved one, speak up! If you are empathetic at all, speak up!!
We need our voices to be heard.

Email Simon Harris Minister for Health
simon.harris@oireachtas.ie

Thank you for reading this essay, you can probably tell I'm quite passionate about it lol.
Much love and gentle hugs to all, now I'm going to collapse.
❤❤❤❤❤❤

Friday, 27 October 2017

The fight goes on

So it's been a while since I've written anything. I keep thinking of things to write about (believe me there's lots of ideas, but then I forget what I was thinking and another day passes).

Latest kick from the "system" is that I have been refused Invalidity pension. The reason given was because of the discharge letters from the hospice in January.
They had stated they hoped for my regaining function and even return to work. Well isn't that just lovely. I'd also like to win the lotto.

Let's get one thing straight.

I do NOT want this life. This is NOT a choice. I want to have the old me back. It has taken me a very long time to get used to the fact that the old ME is simply gone.

I have not given up a 20year nursing career through choice!! I was loving my job and saw real opportunities for growth there.

I have not CHOSEN to be unable to care for my son let alone myself.

Who knows, Maybe if I had daily access to hydro therapy and only left my bed to go to physio and OT then their hopes for my future may be realised.

Let's face it though, it's simply unattainable. No community hydro therapy. No hyperbaric oxygen therapy available. No access to Cannabis. The withdrawal of Opiates for Fibromyalgia patients. Unable to get hips injected all the time.

So yet again I need to appeal another decision.

Oh and the kicker?? I asked about getting back in to the hospice when I was getting my hip injected again...nope, no can do. Need refering in again. It seems I have to reach crisis point again.

My eyes are the latest thing to fail and with my cognitive impairment (let alone the bone deep fatigue and all over pain) I know dam well I'll never nurse again. How can these people do this to us??

So the fight continues.

Just don't give up people!! They want you to go away quietly. DON'T DO IT!!!
Admittedly it can take a while to get over the anxiety and brain fog to actually do these things.

Thank you for reading. Never feel alone lovelies xxx

Gentle hugs to you all ❤❤❤❤
Keep fighting ❤❤❤😘😘

Tuesday, 1 August 2017

Allodynia and Hyperalgesia


Allodynia is a type of pain associated with Fibromyalgia and is considered a rare type of pain. With allodynia, there is a triggered pain response from stimuli that does not normally cause pain. In this case, it causes a great deal of skin pain. The skin burns to the touch and is often described as a sunburn sensation or "sparkler burn". Clothes will hurt against the skin. Even a breeze will feel painful against the heightened and tender skin. There is no exact cause for allodynia, but it is considered to be from central nervous sensitization where there is an increase of excitability in the neurons of the central nervous system. As such, harmless stimulus – like a light touch – activates the nociceptors which are usually activated only in response to intense stimulus causing damage to the tissue and thus causing pain where there should be none.

The pain caused by touch is called tactile allodynia; when caused by movement, it is mechanical allodynia. Thermal allodynia is related to temperature. Other pain conditions can create this response such as neuropathy, post herpetic neuralgia and migraines. In fact, with migraines, allodynia is common in the scalp, although it can occur anywhere.

Allodynia can range from mild to severe and can be all over the body or only in certain areas. It can be continuous or come and go. My own allodynia is one of my main symptoms of Fibromyalgia.  The constant feeling of skin burning.  As I write this I'm aware of my hands, forarms and thighs burning. There's not a lot I can do about it. Sometimes a cooling towel or gel like Aloe or MSM GEL is nice but the effects are limited often offering just a few minutes relief. CBD balm is another thing that does help but rubbing it on is done with gritted teeth as it may as well be sandpaper (I hasten to add it's my skin causing that, the Balm is smooth and soft).

For me, allodynia is a constant companion. It does vary in severity but it's always there.  Some experience it with migraines  however I don't have to have a migraine for it to affect my scalp. Its like someone has yanked your hair leaving a residual bruised sensation. Washing hair is torture as is brushing. You'll have seen I've shaved hair off in an effort to reduce the weight of my hair on my head.
During extreme weather, I also get thermal allodynia that can cause a great deal of all-over sensitivity and makes it difficult to be out on hot days I used to LOVE the sun but now if I'm out I have to be shaded. The opposite is also true, being cold causes physical pain.

Clothing is a common problem with tactile allodynia. There can be a burning or constricting feeling from waistbands, even if they are not tight. Bra straps can create a lot of discomfort. Any clothing closely pressed to the body can seem to be putting ‘pressure’ on the burning sensation, including tags and stitching. Generally, fabric choice can be a real issue as some will seem quite aggressive against the tender skin, but when it is severe, all fabrics will be equally aggravating.
I've ditched the bra, wear clothes inside out and have to wear bigger sizes even maternity clothes to keep clothes away from my skin. I'm one step away from a kaftan lol

I'm currently awaiting a lignocaine (lidocaine) infusion and then the next step will be ketamine!

Here's hoping for relief soon ❤❤❤

https://en.m.wikipedia.org/wiki/Allodynia

https://en.m.wikipedia.org/wiki/Hyperalgesia

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below.

https://www.gofundme.com/invisibilityhurts

Much love and gentle hugs to all 💜💜💜💜

Friday, 28 July 2017

What is Fibromyalgia?

So what is it? It becomes increasingly obvious that even so called experts do not understand the extent of this debilitating illness. It is not the same thing to all people so even fibro sufferers can dismiss others because "well I've got it and it's not THAT bad", well I'm here to tell you that actually YES for a lot of people, me included, it IS THAT BAD.

So here is a list of symptoms of Fibromyalgia, you got a cuppa handy? It's loooonng 😥
I saw this in a group I'm in and it's the most accurate I've come across.

PAIN - diffuse musculoskeletal pain and fatigue. The syndrome is defined by the presence of musculoskeletal tender points on physical examination. Pain is often described as aching, burning, throbbing, gnawing, shooting &/or tingling. It can be localized, generalized, can feel like muscle spasms and can be scattered throughout the body. It may be migratory, with pain presenting in one or more areas on one day and other areas on another day. Pain is often experienced very quickly after any repetitive movement - even something as simple as holding arms up to brush or comb hair etc.

Numerous vague unspecified symptoms that wax and wane and cause fibro sufferers to "just never feel good".

Fibromyalgics have 3 times the amount of Substance P in their bodies than do normal people. Substance P is the vehicle that carries pain stimuli to the brain. The brain may also interpret the pain improperly and respond inappropriately. What might be experienced as a "tickle", itch or annoyance normally - is often experienced as pain in those who suffer with FMS. There are often more pain receptors in FMSers, therefore pain is magnified.

Bilateral Pain in various points in areas throughout the body. There are 18 TPR’s - Diagnosis of FMS is made if pressure on 11 of these 18 points causes pain. Areas throughout the body may feel "bruised" when touched. The tender point is considered to be positive if an approximate force of 4 kg. of pressure causes pain when applied to the specified points. Widespread pain must have been present for at least 3 months with the associated tenderpoint pain in order for Fibromyalgia to be diagnosed.

FMS patients may bruise more easily than others and some may experience excessive bruising.

Temporomandibular Joint Disorder: in many FM patients, problems are encountered because of the abnormal tone in muscles around the joint, not because of abnormalities in the joint itself. (Pain in the face and jaw.)

Grinding of teeth at night / Clenching of jaw at night.

Headaches: tension &/migraine. Visual Migraines may also be experienced. (Search Visual or Ocular Migraines for more information)

Recurrent sore throat.

Chest Pain: Non-cardiac pain that may simulate cardiac disorder. This may be Costochondritis which is pain in the sternum or breastbone where the ribs attach. (Search Costochondritis for more information.)

Heart murmur: may be Mitral Valve Prolapse. (MVP occurs in up to 75% of fibromyalgics. Search Mitral Valve Prolapse + Fibromyalgia for more information.)

Heart palpitations.

Heartburn and digestive problems.

Esophageal dysmotility or reflux.

Back Pain: usually low back pain - may be exacerbated by muscle spasms in this area. A pillow placed under the thighs to tilt the pelvis while in bed may help, as it flattens the low back against the mattress. Pillow should not be under the knees as this might contribute to causing blood clots.

Sacro-iliac instability and pain.

Joint Hypermobility and Laxity: lax ligaments or what is commonly referred to as being "double-jointed". People who have this condition often ache and are more susceptible to osteoarthritis later in life. Studies suggest that joint hypermobility and fibromyalgia are associated and that the hypermobility can play a role in the pathogenesis or development of pain in fibro.(For more information search Joint Hypermobility + Fibromyalgia)

Arm and Shoulder pain: Often burning type of pain - often between the shoulder blades. May go across shoulders and down arms. Neck may also be sore &/or stiff. Arms may ache or pain may be severe in them. One side may be more painful than the other. A small pillow placed under the arm to elevate it slightly when lying down is often helpful, as arms tend to drop down on the bed and pull on the neck and shoulders. When riding in a car, it is often helpful to place a pillow over your knees and rest your arms on it. This helps elevate the arms and shoulders and can alleviate the "drag" one them and stop arms from going numb if this is a problem.

Postural Changes: shoulders hunched forward or rounded, head thrust forward with neck kinked forward, chest sunken, low back pushed forward causing abdomen to protrude, knees locked, muscles in back of thighs flexed - all a mechanism to find a comfortable position.

Painful lymph nodes: under the arms and in the neck.

Carpal tunnel syndrome: numbness, tingling and pain in wrists, hands and/or fingers. Pain in hands makes writing, typing, wringing out dish cloth etc difficult. Pain when plunging hands into cold water. (also pain maybe experienced on entering the water if swimming in cold water).

Paresthesia: Numbness or tingling (non-dermatomal) Numbness in arms and legs.

Raynaud's - like symptoms - numbness and tingling in the extremities especially in fingers, exacerbated by the cold.

Many fibromyalgics feel cold even when it is not particularly cold inside or out. Often hands & feet are very cold. Sometimes the sensation of cold seems to cause pain as well as giving the sensation of cold. A warm shower will usually help to alleviate this sensation whereas turning up the heat in the house does not.

Tennis Elbow: Pain in elbow and forearm.

Dry, itchy, blotchy skin &/or skin rashes. Especially on the face by ears and jaws and on forehead.

Ridges: may develop in finger nails and toe nails. Nails may split. Nails may break off easily. If they do grow they may curve or curl under.

Restless Leg Syndrome: Aching in legs especially at night causes legs to be moved constantly in an attempt to ease the pain or aching.

Weak knees and ankles. Cramps in legs.

Foot Pain: Plantar arch or heel pain, may be plantar fasciitis or just "fibro feet". Orthopedic shoes and orthotics may help.

Muscle and joint aches. Feels like "flu" CONSTANTLY

Severe muscle weakness.

Muscle spasms: may feel like tight knots or charlie horse or lumps. Muscles contract but do not release properly. Muscles apparently may contract without receiving stimulus from the brain.

Twitching: can be muscular - may experience eye twitch or a facial twitch.

Burning sensations in muscles throughout the body.

Nausea: may be caused by overload of pain stimuli bombarding the brain - nausea may also be experienced when moving from a horizontal to a vertical position.

Weight change: - usually gain - a feeling of swelling or puffiness might be experienced. May experience retention of fluid for a few days and then return to "normal". May "feel" swollen even if inflammation and swelling are not actually present. Weight gain may also be due to various medications used to treat fibro.

Hair loss: hair may come out in great "gobs" when combed or brushed. May notice hair coming out when it is being washed as well.

Sleep disturbance/non restorative sleep: may be described as not being able to fall asleep, not being able to stay asleep or more common, "I feel like I haven't slept at all". May awaken frequently and be unable to return to sleep for some time. May wake up "full" of pain and feel "more tired" than on going to bed.

There is a disturbance in the sleep pattern and fibromyalgics are not able to enter into stage 4 sleep, thus they awaken frequently through the night when they reach Stage 4. One may also feel that they are awake and asleep. In essence what happens is that there is brain wave activity of sleep going on in the brain and at the same time there is brain wave energy of being awake going on - almost like the sleep patterns and awake patterns are playing in the brain at the same time. Restful sleep is never achieved. Thus there follows deep aching discomfort throughout the body and the feeling of being exhausted. The shoulders, neck and low back are often the most painful.
Due to the lack of Stage 4 sleep, muscle repair does not occur properly and therefore muscles take longer to heal and regenerate after micro injuries or trauma, as is experienced by everyone in day to day life. Micro trauma during exercise is not repaired in FMS patients in the same manner as it is in normal people - thus the muscle stiffness causes much more distress in fibromyalgics or FMSers and takes longer to subside, therefore exercise is not refreshing but continuously causes pain making patients reluctant to engage in an exercise routine.

Frequent, unusual nightmares or being unable to dream - "black" heavy sleep may be experienced if medication is taken to aid staying asleep.

Night sweats: wake up drenched in perspiration, then become very cold and maybe even start to shiver.

Intolerance to cold: muscles contract in response to exposure to cold - cold weather, cold drafts, ice packs etc. Sometimes referred to as muscle jelling as in jello - jello is fluid and liquid when warm and jells when chilled. Extreme sensitivity to seasonal changes, climatic changes - rain and impending storms. Most Fibro patients find that their muscles respond to the application of warmth but that application of ice packs or cold intensifies pain.

Body temperature fluctuations - hot one minute and cold the next. Perhaps inner "controls" (thermoregulatory system) are out of whack.

Fatigue - can be described as feeling tired to being extremely exhausted after minimal physical exertion. Sometimes a short nap in the afternoon may help relieve the feeling of fatigue, yet some people require frequent rest periods to get them through the day. Sometimes the fatigue can come on suddenly for no apparent reason and can be very debilitating. Short periods of exertion can require long periods of rest to recuperate. Can be severe and have a sudden onset even with minimal physical exertion. May experience sudden debilitating fatigue that makes it necessary to immediately stop whatever one is doing and go and rest.

Lightheadedness

Vertigo

Disequilibrium - impaired co-ordination: misjudge distances - bang into door frames, walk into furniture, walls etc.

Cognitive function problems: such as attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, difficulty with concentration and short-term memory. These things are commonly referred to by FMSers as "fibrofog".

Neurogenic inflammation: rashes and hives, inflammatory sensation, with rashes that may be severe, severe itching with inflammation - initiated by nerves.

Alteration of taste, smell, hearing. Some odours may make one nauseous.

Sensitivity amplification: may be more sensitive to smells, sound, odours, lights, pressure and temperature fluctuations, vibrations and noise etc. - the buzzing from fluorescent lights, hum of computer, buzz of overhead hydro lines may become almost unbearable to an FMSer at times. FMS hyper-sensitizes nerve endings.

May develop food intolerances, allergies and chemical sensitivities.

Changes in visual acuity: impaired function of smooth muscles used for focus as well as skeletal muscles for tracking. May experience blurred vision &/or double vision. Some people require two or three different eye glass prescriptions as their needs change with the Fibro symptoms. May experience Visual or Ocular Migraines.

Exaggerated nystagmus: involuntary rapid movement of the eyeball.

Intolerance of bright lights/sunlight.

Dry eyes and mouth: dry mouth can cause dental problems - dry eyes may cause inability to wear contact lens, may cause other visual problems, may require eye drops to keep eyes moist and free from infection. Eyes may be very dry at times and water at other times.

Hearing Loss: low frequency, sensorineural hearing loss.

Decreased painful sound threshold. Sometimes normal everyday noises become very irritating. May not tolerate radio or television well.

Ringing in the ears - ringing and sounds like the rolling ocean or whispers may be experienced.

Allergies: Severe nasal and other allergies and patients may also have a deep sinus infection.

Environmental sensitivities may develop.

Enhancement of medication side effects.

Intolerance of medications that were previously tolerated.

Intolerance of alcohol.

Intolerance of caffeine.

Intolerance of processed white sugar and most artificial sweeteners.

Premenstrual Syndrome: swelling, tenderness and lumps in breasts are often experienced with PMS, painful periods as well as mood swings, exaggerated emotional responses etc. etc. as common in PMS.

Fibrocystic Breast Disease: may be experienced by FMSers especially prior to period. Breasts may become very swollen and sore and be full of cysts or lumps that disappear after period.

Interstitial cystitis.

Irritable Bladder/Frequent Urination: might be uncomfortable or painful. Also bladders spasms may feel like a bladder infection.

Irritable Bowel Syndrome: alternate between constipation and diarrhea. Frequent abdominal pain, gas and nausea.

Depression: may be reactive or clinical. Often pain and feeling ill all of the time causes the depression. FMSers are depressed because they hurt. They do not hurt because they are depressed.

Anxiety: may include panic attacks.

Emotional lability or mood swings. May be tearful at times because life seems overwhelming.

Irritability probably due to pain and inability to do the things that you need to do and want to do.

Personality changes: usually a worsening of a previous tendency. People who have FMS sometimes have a hard time accepting their limitations and the loss of the person they "used to be" - they may actually go into the mourning process. Because FMS is an "invisible" sort of illness - and patients often see many Doctors before being properly diagnosed, they often begin to doubt themselves.

Fibromyalgics desperately need support and understanding from those closest to them but they often feel alienated because of their illness and inability to participate fully in many common activities of daily living. Many are unable to continue working at the jobs they love and thus lose part of the identity that their job may give them. They begin to lose their sense of independence and productivity and their sense of value.

Anger and resentment towards lack of understanding may alter FMSers personality drastically and cause even further alienation from family and friends. Along with this sense of helplessness and worthlessness that may develop, they may begin to feel guilty for not being able to be the person that others need or expect them to be. They may become extremely depressed and begin to lose interest in life altogether.

Fibromyalgia does not usually respond to anti-inflammatory medications. Initially there may be a positive effect but often this initial response subsides. Low doses of anti-depressants are often administered in an attempt to modify sleep patterns and serotonin uptake. Analgesics likewise often become ineffective once the body has become accustomed to them. Doctors are sometimes reluctant to prescribe narcotic analgesics due to the possibility of addiction. Various herbal remedies are found to have some positive effects by some fibromyalgics as are various vitamin and mineral supplement preparations. There are special herbal combinations specifically for FMS.

Exercise Programs are effective for some FMSers while they exacerbates the pain for others. Swimming is helpful for some people. Warm Baths are sometimes comforting especially if sea salt or epsom salts are added to the water. Heating Pads are helpful - either regular pads or moist heat. Infra Red Pads are also helpful for some patients. Analgesic rubs or liniments also bring some temporary relief. Massage, Reflexology and Chiropractic treatments are effective for some FMSers but tend to be aggravating to others.

If you got to this message then I thank you for taking the time to read this far.
Please please be kind to each other. If you are the person with fibro be kind to yourself too. Take each day as it comes.
If you're the friend or loved one then keep doing what you're doing. If you read all of this it shows you really want to understand and help. Just be there and don't judge xx
Gentle hugs to all ❤❤❤❤

Monday, 24 July 2017

Is it me?

Some of you may know I'm a big fan of CBD (the none psychoactive part of Cannabis) this wonderful plant has allowed me to reduce my medications significantly. I'm off my morphine type drug, I was feeling really positive......

(CBD deserves a blog all of its own so I'll leave that for another day ❤)

So what happened? Two particular Health care professional's happened that's what.
What the hell is wrong with these people!?!?
It feels so odd to say that because I was one not too long ago. I can kind of excuse myself as an ICU nurse (I still feel guilty for not acknowledging chronic pain conditions more), but if pain and rehab is your ballywack then at least do your research. 
I knew it wasn't going to go well as soon as the nurse specialist in rheumatology hadn't heard of CBD. She looked at me like I had two heads....hey that's a point!! Is it me? Do I have 2 heads? 
I mean like seriously, No body, and I mean NO BODY would want to live like this. The constant pain, the constant flares, a scalp so sensitive you shave off your hair. Hugs from your loved ones making you grimace with pain.  
I understand how stress makes the pain worse, of course I do. If anyone wants to take away the very real causes of my stress then have at it!! 
To be given no help apart from being told I really should engage with Psychiatric services is quite frankly insulting. 

Like i said I'd gone into this appointment up beat (I'd cut down on so many of my meds since my previous appointment thanks to CBD), making it quite clear that I'm fighting every single day but suggesting I may need more help, another stint in rehab.....and yet I came out a shadow of myself and YES ironically probably in need of psych help.  The people we turn to for help have no idea how much faith we put in them. How much we trust them. How easily they can shoot us down.

This was a couple of weeks back. I've since picked myself up, dusted myself off and gone back to the fight. 

I know now it IS NOT ME, it is NOT all in my head.....unless you are referring to my brain, yes that is in my head (I saw it on MRI)....

So I can wholeheartedly reassure all my fellow fibro warriors (and all other invisible illness sufferers) YOU ARE NOT ALONE and IT IS NOT ALL IN YOUR HEAD. 

I BELIEVE YOU ❤❤❤❤❤

This illness is real and it is Debilitating. It causes more pain than any "normal" person can comprehend. 10 times more intense so I believe. 10 times!! Hyperalgesia it's called if you want to name the beast. This is on top of the migraines, eye problems, allodynia, joint pain, bowel issues, sensory overload, cramps, and so much more......

So I urge you again to share, get the word out. It's the only way we can hope to be listened to. 

Thank you for reading lovely people. 
Sending gentle hugs to all that needs one ❤❤❤❤❤❤❤

If anyone is interested in CBD then please join our Facebook group:

CBD CONSUMER GROUP

https://www.facebook.com/groups/356332264751778/


Thursday, 29 June 2017

Perception

How others look at us, the chronically ill, impacts on our lives tremendously.

I have recently been refused motability and my GP refused to approve my OT's request for a scooter.

We go back to that same old statement
"But you don't look sick"

(And the silent reply "and you don't look .....insert adjective here" )

The thing is. You can't see my pain. No one can. As I've said before I've a terrible habit of playing it down. Wearing my mask.

I want to try and explain my pain to you. This is not intended for you to say "oh poor you" but to enlighten you to the hidden suffering that people with hidden illnesses endure. I warn you this is a long one. Grab a cuppa and get comfy.

So....where to start.

Before I do, I need you to remember this, it is not a case of one symptom at a time for a short period (chronic pain by definition is pain that persists after 3 months) but ALL of these symptoms ALL of the time, going on for more than a year now.

So let's begin....

Some of you may have seen pictures of me sporting half a shaved head (wouldn't been a full GI Jo if I'd had the guts).
This has nothing to do with fashion I assure you. My hair literally hurts. The weight of my hair pulling on my scalp causes pain. God forbid my hair gets pulled (I've a toddler) then it is literally like how I imagine a knife stabbed in the head to be.

The next knife in the head is this weird "headache" (hard to call it an ache because it's stabbing but hey), the nerves / blood vessels around my temple and the side of my head literally can't be touched. The pain is immense. On top of that, is the random, out of the blue ice pick in the brain agony. That one you literally have to cradle your head and DO NOT MOVE until the ice pick let's up.

Added to this is the good old migraine. Centred mainly around my right eye of happily gouge it out with a rusty spoon at times.
As an aside, turns out my eyesight is failing too. Nothing correctable it seems but structural and not improved by glasses, knowing that will likely deteriorate is really scary.

Following on from that is rather boring neck pain. Base of skull pain.
Shoulder pain.
Back pain from top to bottom.
Hip pain
Knee pain
Ankle pain.

These are all up and down like a yo yo, the "worst" but can change in the blink of a site eye.

All this is wrapped up in skin that hurts.
This is really hard to understand for some I think.
Remember that whacking bruise you got from hitting your leg off a table or the like? Apply that tenderness (when you press on bruise) to your ENTIRE BODY......and now burn it.  Sunburn I mean. Bad bloody sunburn ALL OVER.

Clothes hurt me, cuddling my son hurts me. Ahh jeez I could go on and on, I think you get the picture.

Add to this light, noise, smell over sensitivity my poor nervous system is ramped up constantly.

Now don't get me wrong they're not all at max all of the time. They are all there though ALL OF THE TIME.

None of this is visible. You can't see it. A lot of you probably don't believe it.
It's somewhat incomprehensible. All this pain and suffering non stop.

I think maybe you can see why I get frustrated, upset, angry when denied something that would really help.
Make my life more bearable.

I rarely get out. The car hurts me. I can't walk for distances. Pain and fatigue stops me after 20m. I can't push my wheelchair myself as my hands and wrists hurt (oops missed them off my list). Yet I am not entitled to a scooter because I will become complacent and "stop trying".

I'm getting some relief from CBD and I'm very passionate about this, I'm desperate to find something that works for all of my pains. This is another thing not available on prescription of course. Not everyone knows about it though and of course money is an issue.  Doctors would still rather prescribe medications that have so many interactions and side effects they can sometimes make matters worse.

I guess the point of that essay is to implore you to look beyond the mask we wear. Consider the pain and suffering endured daily.  You may be the person affected or have a loved one who is.  I ask you to please share this blog.

Awareness is needed! This awareness is needed in the medical field too, knowledge is sadly lacking when it comes to Fibromyalgia. I know other sufferers of invisible illnesses feel the same. To all of you suffering I give you the very gentlest of hugs.

Thank you so much for getting through that ramble, you taking the time to read it is the first step.

I do have a Go fund me page if you are in a position to help at all.

Much love to all, keep fighting peeps xxx

Sunday, 28 May 2017

An up hill struggle

Blimey O'Reilly it's never ending!!
I've had enough of this ride, can I get off please!!???

I've been in a flare for a while now with the severity going up and down.
Well last night and this morning I'm in the worst flare to date!!

What's a flare you ask.

It's different things to different people. Not all flares are the same. If someone says to you they are flaring, please don't dismiss them. They are telling you that their pain etc has spiked and they are struggling to function.

For me the skin started last night. All over sun burn. Clothes or even BREATH touching skin causes pain. I've now got all my clothes, Inc socks, on inside out. Something I've had to do for a while but now my old faithful top is causing pain too. So that's inside out as well.
On top of that is bone, and muscle pain. My entire body hurts. I can barely move. My ribs hurt to breath. Every joint hurts. It's hell.

What did I do to set this off you may wonder?

I sorted out our kitchen drawers ahead of having to leave our house (another story).  That's all I did though. I even had a chair positioned to help.

Life with Fibromyalgia is life on a knife edge.

You never know what will set you off.
Granted with me my tolerance level is very low, I will invariably pay for any activity.... But cleaning the drawers!!!??? I mean come on!!!???
How the hell are we going to manage moving house with a burden like me and a 3yo!!???
My partner is amazing but he is shattered.

My point dear readers is to ask you to please take the time to listen to your loved ones. If you are the person suffering below you will find a link to an interview I did with the journal. Please feel free to share with your family members. Some of you have reached out to me and said how much it resonated with you so please do share the heck out of it.

We need to raise awareness!!

http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below. Being sick and being on disability with zero income is no fun. Especially with a young child. We put ourselves after him. Always. As all parents do. Anyway. Much love and thanks to all 💜💜💜💜

https://www.gofundme.com/invisibilityhurts




Sunday, 9 April 2017

The toll it takes

Its kind of hard to keep track. Its only when you look back it hits you.
The hours lost to pain.
The words no longer able to find
The confidence vanished.
The tears shed.
I can't believe it's been so long since my last update. Oh I'd love to be able to tell you that things are on the up.
Errr NOPE, just when you think it can't get any worse.....oh yeah it can.
My health is much the same, on its way down again. My hips will need injecting soon, I don't seem to have a follow up appointment after all that hard work in Harolds Cross Hospice and no follow up...eh??
Just get on the phone you may say. I can't think how to explain how hard it is to talk on the phone. Writing is one thing. This piece was started a month ago. The phone though. There's no hiding the fact that you can't find a word. Have a total, and I mean total mental block, not one word. You can almost see the blank space. The more you realise what you're stumbling over then the anxiety kicks in and the stuttering starts.
This is me remember, the ICU nurse. Never had a problem talking, my friends and colleagues can attest to that! Lol
So, the phone call goes unmade.....
That seems so insignificant now though.
My darling partner is finally divorced from his ex.
I will soon (and my 3yr old son) will be made homeless.  Oh and having to rehome our fur babies that we've had 10 years!! That's heartbreaking enough as it is!!!
No income, no savings, living hand to mouth on disability allowance. Waiting on a carers allowance appeal. Yup, appeal. I'm not disabled enough. Ugh.
So here we are appealing for emergency housing. 
Sounds so dramatic but it's actually true.
When you are really ill, you rely so very much on others. The stress of all of will only serve to make me worse (dread to think how).
Again I stress, I'm not alone, these struggles are not isolated. Please if you know someone with a chronic illness, just see if there's anything you can do for them? Can you make that phone call?
Once again I've waffled on.
Thank you so much for reading this, please share my story if you can.
I recently did an interview for the journal.ie which I would love for you to read, watch and share.
I've not mentioned CBD here but you will see me talk about it in my interview.  I'll discuss it properly at another time.
http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond
Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below.
https://www.gofundme.com/invisibilityhurts
Much love and gentle hugs to all 

Monday, 3 April 2017

A public letter to Simon Harris Minister for Health AND my local TD


Dear Simon,

I am pleased to say I was recently awarded Disability allowance. 

That's where the good news ends.

My partner was refused Carers allowance!!! 

We have appealed but is there any way you can help us on this? They stated I wasn't disabled enough. Its a sick joke. 

With this and the ongoing issue with medical cannabis. And the press glossing over the fact that 10's of thousands of pain sufferers are going to be left with no viable alternative to opiates. 

I can tell you this without a shadow of a doubt, as I have seen both sides of the coin now, "We" are simply desperate for an alternative. One that is less likely to KILL US. That statement is not an overly dramatic one. It is fact. Opiates kill. Cannabis doesn't. 

I haven't heard from you in a good while. 

I trust you will make time to reply to me this time. 

Regards, 

Jo Allen 

An update

Hi everyone, I wanted to check in with you all and let you know I'm not being rude, I have not received any of the money recently raised yet so I can't show you what you've got me.

I was just concerned that people might be thinking I was ungrateful. Most definitely not!!! I love that people would do these things for me. Honoured in fact.

I'm pottering around, trying not to spend too much time in bed (she says lying in bed shhh 🙈🙊).
I've been flaring now for 5 days, at least, and its exhausting.
My whole body is burnt and bruised with no outward evidence of injury. It makes it so difficult to wear any clothes (no I'm not in the buff), or lie on anything but my softest bedding in my softest PJs.

When I get some of the money its on my list!
Along with a lot of things lol

Anyway, thanks again and much love and gentle hugs to all.

💜💜Jo💜💜

Sunday, 26 March 2017

Happy Mothers Day!

Happy Mother's Day to all you wonderful mothers out there!!

I am sure I am not alone and spending this lovely day in bed, in pain.

Not just "normal" pain though, but this incredibly awful Skin Flare. Its hard to describe, kind of feels like your skin is on inside out, all over body sunburn.  I can feel every stitch of clothing and bedding and it hurts. There's nothing I can do to help except take my heavy artillery meds and hope it passes.

What did I do to deserve this one you ask?

I went out for a drive with my boys yesterday. Yes, I sat in a car for an hour.  That is it!! Oh and I pushed my darling boy on the swing in our back garden. Let's not forget that one!! Ffs!!

As a result I didn't sleep well, tossing and turning (waiting to basically pass out) and when I did sleep, I woke up in agony.

My Darling boy climbing over me this morning was insanely painful. Sadly he is too good at saying Ouch because it leaves my mouth before I can stop it.

But I pasted on a smile and thanked him for the wonderful card he had made (thanks Daddy) and hid my agony to give him a cuddle.
His my relief when I knew they were going out so I could suffer in silence. Cue mummy guilt (my constant companion). She's a right b@tch that one. Follows me around constantly.

Anyway, I know I am not alone. It saddens me to see just how many people are living a similar hell to me.

To you, if you are reading this I want to say. Stop. Take a breath. Take a moment to think about what's good in your life. Embrace the love and GIVE YOURSELF A BREAK!!  Don't be too brave, take your meds, take it easy.  Shut mummy guilt in a freaking box and shut the lid! She has no place on your shoulder today.

To everyone else, do you love a chronic pain sufferer?
See if you can do one small thing for them to help them take care of themselves.
Do they need anything from the shop? A shoulder to cry on? A non judgmental ear? Someone to take the kids to the park??

Whatever it is don't let them put on their mask and say No "I'm fine"
Its not true!!
If they're having a good day please remind them not to over do it. There is always a price to pay sadly.

Anyway, that's me done waffling. I'm following my own advice. I'm chilling, relaxing in bed, waiting on meds to kick in.  Listening to an audiobook (can't hold books these days) and giving myself a break!
Its OK not to be OK!!

Much love and gentle hugs to all 💜💜💜💜

Thursday, 23 March 2017

Heartfelt thanks 💜

I want to take this opportunity to thank everybody who was involved with The Great MoJo run (mojo was my nickname at primary school), I am truly thankful.  From the organisers to those who participated and /or donated. Thank you 💖

I have a massive wish list of things that will help me with my daily struggles. Trust me when I say I'm thinking very carefully about what to spend the money on.   I am very conscious of all the hard work and effort that went into this event and I want you to know just how much it means to me.

This is not just about money, this is about you all helping me with my pain and daily struggles.

I am truly blessed. Thank you!!





Friday, 10 March 2017

Humbled

Huge day tomorrow.

https://www.facebook.com/The-Great-Mojo-Run-1138175352947409/

The MoJo run is on tomorrow.
I still can't believe that my friends and neighbours are doing this for me. It is truly humbling.

Love and Gentle hugs to all 💜💜💜💜💜

Friday, 17 February 2017

The rehab bubble

As some of you will know i recently spent three weeks in Our Lady's Hospice in Dublin.

To say it was emotional and challenging, is a HUGE understatement.
I truly cannot speak highly enough of them. I count myself amongst the most fortunate to have been able to access such care. Its been a long time coming but there are those out there that just cannot access such a service. They are stuck in the same hell I was with no hope in sight (believe me that's exactly what it felt like, hell).

The team is amazing. A true multidisciplinary team. Between the nurses, doctors, physio's, OT's, social work, ancillary staff, portering, they are all fantastic. They truly wanted to get me back on my feet, help me to become me again.

To begin with it was quite traumatic, telling my story again and again. I was pure exhausted from crying my heart out.
One of many such meetings was with the clinical nurse specialist who had me in tears by stating off by saying just 3 words.

"We believe you"

I literally sobbed. She went on to acknowledge my pain, our struggles as a family, just everything. When you live with an invisible illness its so very hard to live with the judgement. The "you look too" "you don't look sick". Those phrases burn deeply. Its not just the phrases though. It's the looks too. I hang my head these days as I don't want to see people looking at me.

As well as changes in my medication, injections into both hips, I also  had daily Physiotherapy, Hydrotherapy and Occupational therapy. Unfortunately my heightened sensitisation (yeah thanks Fibromyalgia) meant my eyes and my ears were being constantly bombarded. Those bloody lights and the NOISE!!! omg it's constant!! That stimulus sadly meant I was hit badly by migraines. That b@stard meant some days I just couldn't do what I was there to do. I couldn't lift my head off the pillow.
I took to walking around like a pop star, sunglasses a permanent fixture. Not for vanity but necessity.

Anyways it was easy to forget that when you are in Hospital getting such amazing treatment, you are actually living in a bubble. No 3 year old, no stairs, no bills, no other stresses.

Back at home that bubble ain't there. Just pure harsh reality. I am still in a back to reality shock state, but I'm glad to say I am walking without my crutches in the house. I am able to climb the stairs a couple times a day. I can even leave the house some days (wheelchair on standby, crutch in hand, but that's ok).
I have to plan plan plan, chose what I'm going to use my energy for that day. Another thing I have to do is be kind to myself. I'm fighting a daily battle, it is incredibly hard, but I am TRYING!!  Thank you all so much for your kind thoughts and words. It means a lot.

As always much love and gentle hugs to all, don't give up!! 💜💜💜💜

Please please share my story, spread the word, share the love.

If you are able please help me continue my fight. 

http://www.gofundme.com/invisibilityhurts 

Friday, 10 February 2017

An injustice!!!

I had a post here ready to go about my stay in the rehab centre in Harold's Cross Hospice. I am going to put that on hold just for now as I simply MUST comment on the HPRA report released today.

I am quite confident that I am not alone when I say I am thoroughly disgusted by the reference to chronic pain in the afore mentioned report, and the overt exclusion of chronic pain from the list of approved conditions.

Firstly I will state that, of course I am delighted for those people that this report will help. I would have to be heartless not to. However, I feel a whole range of emotions about being essentially devalued once again.

I have attached a screenshot of the key part of the report (it's 80 odd pages long so good luck if you want to read it yourself, I'll post the link at the end).
I will paraphrase a bit here because my memory is that bad.

"while the evidence for cannabis in the treatment of chronic pain is acknowledged, the HPRA does not support it's inclusion as a specified medical condition for the following reasons"

1. The causes of chronic pain are wide and varied -

Yes they are. And?? Pain is pain is pain. Cannabis has been shown to help pain.   Next!!

2. Physical, social, emotional and spiritual factors influence a person's pain and therefore makes it more difficult for a doctor to assess it's effectiveness.

Obviously written by somebody never affected by chronic pain, because of course it bloody is!! We are social creatures, we are affected by our environment and the lives we are part of. The life of someone in chronic pain is one that can literally dig you into a hole that it is extremely hard to get out of.  Chasing pain relief is an ordeal in itself. The stigma attached to an individual seeking pain relief is quite remarkable. You leave yourself laid open, bare, inviting judgement and having to justify your very existence it is nothing short of soul destroying.

3. There are a large number of authorized medications that are of proven effectiveness....

Oh really, are there? And do they work for each person in the same way? Are they easily accessible without judgement and being labeled a drug seeker? Are they free from risk of addiction? Will one drug work for your condition infinitely?
That would be a big fat f@cking NO!!!!

This leads us on to a doozy at #4

4. Chronic pain is common. 

Well pardon me, but no shit Sherlock. The number of people that would be looking to access MMJ (medical marijuana) for their pain relief is HUGE!!
Let's ask ourselves who would be the loser in that equation? It certainly wouldn't be us the potential user. It's the pharmaceutical industry and ultimately the government through revenue it brings.

I personally had been in touch with Simon Harris, Minister for Health, on my journey to date as I've tried and failed to get help. Here again it shows he is about as much use as a chocolate fireguard.
I feel hugely let down. I can't actually list the number of feeling that have been spurred by this but you can be guaranteed they are not positive. I will continue to fight and I ask, nay beg! That you petition Simon Harris on behalf of all the chronic pain sufferers that have been sorely let down by this latest failure. 

The fight goes on. 

As always much love and gentle hugs to all, don't give up!! 💜💜💜💜

If you are able please help me continue my fight. 

http://www.gofundme.com/invisibilityhurts 


Sunday, 29 January 2017

The story continues

As some of you may know 3 weeks ago I was forced to visit ED again thanks to the pain associated with my Fibromyalgia (blog title Third time unlucky).

I've been in touch with the minister for health Simon Harris before and I've just sent him another email, I will not go quietly, will not suffer in silence.

"Dear Simon

Yet another unsuccessful ED visit left me quite literally at breaking point. 

I received atrocious treatment from a senior nurse who deigned to comment on me in my wheelchair. 

Asking me what I was doing in the chair, could I not walk, after saying "no not really" her response was "well how did you get in the chair". This is absolutely DISGUSTING treatment of any person in a wheelchair, at the time though I said nothing and justified myself to her. 

This however, is not why I am writing today. I will get dates etc and be in touch re an official complaint. By the way I've heard nothing from Tallaght hospital....

You may recall I was waiting on Rheumatology and Pain clinic appointment's. 

I saw Rheumatology assessment physio in December. At this point I was referred to Our Lady's Hospice in Harold's Cross for their programme. 

Following my disastrous last visit to SVUH my partner got on the phone and basically begged for my assessment to be done as an emergency. Finally we were taken seriously! My ED visit was Monday and I was seen in OLH on the Wednesday. 

I was finally acknowledged for my condition and was admitted as an emergency the following week. 

I am at the end of my second week as an inpatient and will be back next week for a third. I count myself as lucky to have accessed this service. Many people in similar situations are not as lucky. 

This brings me to my reason for writing. 

I've been following the progress of the Medical marijuana bill avidly. I strongly believe that this needs to be made available for those of us with specific conditions. 

However, it is not as simple as that. I MUST be available on the Medical card. If not, yet again, those of us who need it most will not be able to access it. History will repeat itself like with the Nabilone. 

I'm doing lots of research into the benefits of cbd and am in contact with suppliers from the uk. I am also part of a team of users who are starting a consumer group for users of CBD. 

I would appreciate your feedback with regards to whether we are looking at CBD or a full spectrum product (some people should actually avoid THC), and whether you plan for this to be on GMS. I do plan to reach out to Vera in the meantime too."


Tomorrow I'll be back in for week 3 away from my boys, the fight is real and unrelenting.

Please support those of us with invisible illnesses. Share share share!!

Gentle hugs and much love to all 💜💜💜💜

Saturday, 14 January 2017

A Glimmer of hope

I wanted to put this in with my last blog but I also was very aware that I'd been babbling on.

I will pick up where I left off in my previous rambling.
Third time UNLUCKY http://invisibilityhurts.blogspot.com/2017/01/third-time-unlucky.html

So....We got home last Monday night and I literally hit rock bottom. I felt myself disconnect, I was numb, I couldn't stop crying. I took every tablet I had to hand (I know) and I eventually slept.
Thankfully when I woke up I did not feel like I had the night before, that had scared the poo out of me.

On the Monday I had received a letter from Our Ladies Hospice in Harold's Cross stating they had received my referral from the rheumatologist in Vincent's. I put it down, just thinking Oh well...I'll wait. Then of course ended up in ED. Told by the doc there that I'll just have to wait.

My man was not giving up though. He got on the phone and spoke to a lovely lady in patient services at OLH. She said she would look into it for me.
Let's just say I didn't have the best day Tuesday, Brian ended up phoning her again bless him because he didn't know what to do with me.
He gets off the phone this time and she had only got me in for my assessment the NEXT DAY!!

Wednesday I went for my assessment. I met with an Occupational therapist, Physio, and Nurse and my faith in my peers was restored!!
They knew EXACTLY what I was talking about. I can tell you I dehydrated myself with the amount I cried. The understanding, empathy and compassion was as it should be. They all agreed that I needed an emergency admission.

I left that day thinking "it's ok, I can cope for another couple of weeks, only a couple more weeks"

Got home and into bed Wednesday afternoon, received a phone call a couple of hours later saying I was being admitted next week!!
I was overwhelmed! I think I must have thanked her about 20 times lol.

This brings us to tonight. I've knackered myself packing. Topped up on my tablets and am hoping for some sleep tonight (more than 3 hours PLEASE!!!). I go in for 2 weeks tomorrow. It's a Mon to Fri ward so I get to come home to my boys at the weekend.

I am filled with mixed emotions, I am excited, kind of. I'm scared (what if last Wednesday was the anomaly and no one will understand), I'm heartbroken at leaving my son.....But...He needs a Mum that can do more than lie in bed crying.

I'm not giving up yet.  Watch this space!!

Once again thank you for reading.

Please Please share folks. Let's raise awareness! People with chronic illnesses do not WANT to be in ED, in fact I'd go as far as to say most of us would try ANYTHING else first.  If you are in the medical profession please remember compassion, it may not seem much to you but believe me it means A LOT!!

Also the Link to my gofundme page is below. As embarrassing as it is to need to ask. This is what it has come to.

Gentle hugs to all 💜💜💜💜💜

http://www.gofundme.com/invisibilityhurts

Tuesday, 10 January 2017

Third time UNLUCKY

You know what its like...you think it cannot POSSIBLY get any worse!!?? Then..guess what!!?? Yup..it pigging does!!!!

So.....I'd gone to my doctor last Wednesday and she saw the state of me, we made a plan that I go back in on Monday to get bloods done and formulate a plan. Monday arrives and she admits that she wanted to send me in to hospital the previous week, but with the bed crisis being critical she didn't want to put me through it. Now though, my condition had gotten so bad my motor function was being affected. I was spiralling down and we didn't know why!!!

We decided that as my Rheumatologist and Pain doc was at St Vincents in Dublin, then that's where I should go. Neither of us for one minute thinking they wouldn't give a shite! Sorry but its true.

Anyways.....off i trot to St Vincent's UNIVERSITY Hospital in Dublin!!

Un-flipping-believable treatment. Not in a good way.
Reception staff, lovely, kind, understanding.
Triage? Err not so much. Remember now I've deteriorated to the extent to needing the wheelchair for anything bar pottering to the loo at home. First off, my wheelchair would not fit through the triage door. I kid you not. Its 2017 and my wheelchair could not get through the door and be maneuvered into place. That's not even it though.
You will probably have read me previous blogs about ED treatment well this takes the biscuit. The triage nurse in her fancy navy scrubs looks down her nose at me in the chair and starts to question my NEED of said chair!  She asks me in such a derogatory tone, if I can walk to which I said "well no not really", her reply?? "Well how did you get in the chair then?" At this point I'm a bit shocked so I just say "with difficulty".
Yet again I wear my heart on my sleeve and pour my heart out only for it to fall on deaf ears.

Yes I KNOW I am not dying, and I KNOW I do not have a limb falling off. And yes I KNOW this is not the way to access diagnostics. However I was at a point of true desperation. I was there pleading for help. Begging for help.

What did I get? Incorrect medical advice. Told to just take more drugs. I did inform the doctor I was already taking the max daily dose, she said no, take more frequently. I don't trust my brain any more so I just say okaaaay.  In my head thinking, I'm SURE that's not right. Turns out I was right!!! Imagine if someone didn't have my knowledge (such as it is these days)??
With this gem of advice I get told to go home and basically wait for my appointments to come through.

Yet again makes me ashamed of my peers. Someone does not choose this life. If you think at any point this is a choice we make, think again!

Anyway I've waffled on long enough, again. Thank you for reading.

Please Please share folks. Let's raise awareness! People with chronic illnesses do not WANT to be in ED, in fact I'd go as far as to say most of us would try ANYTHING else first.  If you are in the medical profession please remember compassion, it may not seem much to you but believe me it means A LOT!!

Also the Link to my gofundme page is below. As embarrassing as it is to need to ask. This is what it has come to.

Gentle hugs to all 💜💜💜💜💜

http://www.gofundme.com/invisibilityhurts