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