Thursday, 19 July 2018

A good news story (for a change)


It's so nice to be able to write a positive blog for a change.

To recap:
We were made homeless in Ireland. 
Let down by the system completely. 
To be honest both me and my partner were at breaking point. 
The very real possibility of being on the street was horrific. 
I'm in enough pain in my bed 20 hours of the day... take that bed away from me,  along with roof, it didn't bare thinking about. 
That was beforeI even right of my 4yo on the street....

So we decided to STOP.

STOP looking for houses for a while. 

STOP the constant rejections when landlords didn't choose us. 

STOP begging for the help that should be offered.

STOP being made feel like utter crap. 

We will probably be judged for doing this but tbh our mental and physical health was in too much danger to do anything else.

Instead, we took the decision to pack up or remaining possessions, (after we had sold or gave away the majority) and head to the UK for some much needed respite.

We are staying with my parents. My son is absolutely LOVING being with his grandparents, and we are finally not fighting all this shite alone. 

We don't know where we will end up but we did decide that there was something proactive we COULD do. 

We are GETTING MARRIED ❤

We've been engaged for years but been waiting on the divorce (that made us homeless funnily enough) to be able to do so.  

The old clichè We don't have much but we have each other, couldn't be truer.

Obviously it's not going to be a lavish affair,  a small registry office "do" is the plan. 

I'm currently having fun whilst lying in my bed seeing what bargains I can find.  It's amazing what's out there. 

I don't know how I'll cope with the Day itself but I'm hoping a late seated Ceremony and relaxed evening will be doable.

I'm going to pimp up my walking stick and may even pimp up my scooter with some just married stuff lol

If any of you reading this have any tips I'd love to hear them. 

Anyway, as always,  thank you for reading. 
Remember we can't give up people, we HAVE to keep fighting.

Gentle hugs and much love to all
❤❤❤jojo❤❤❤

Tuesday, 15 May 2018

I'm Done

I'm sad.
I'm dejected
I feel thoroughly let down.

Why?

Some of you may not know of the struggles my family are facing aside from my health issues.

My partner got divorced last year and was ordered to sell the house. 
Pretty standard I guess. 

What's not standard is us having nowhere to go.  Nowhere.

I've lived in Ireland for 15years. Brian is Irish as is our son. 

The Irish government has failed us. 

Last year when we first learned of our fate we engaged with the council and the Simon community. 
All the time when we asked "what if we don't find somewhere?" We got the reply "that won't happen" time and again.  As the months passed and we were getting knock back after knock back "That won't happen " "you'll be fine".
Well 12months later and guess what!!??

It HAS HAPPENED and we are NOT FINE.

We've travelled for countless viewings, meetings in Wicklow council (an hours journey is no fun for me I can tell you), filled out forms galore (not an easy task for either of us with our health issues), begged for help,  been on the radio,  in the paper,  written to MP's, appealed for help from councillors.
EVERYTHING

Now we are done.  At the end of our rope.
Totally failed by the Irish government. 

HAP does NOT WORK. I believe it's hard for family's who are working but for us? Nope.
Nobody wants a disabled woman,  her child and her carer who's only income is benefits (which have been fought very hard for,  still awaiting appeal decision on latest one but that's another story).  Landlords aren't legally allowed to discriminate but we are proof it happens.
This all falls firmly at the government's door.
Their lack of social housing let alone housing suitable for those with special needs is at the heart of all this. 

So now with a court summons sitting on the kitchen table we are selling our worldly goods (including said kitchen table).

There is NOWHERE to go here in Ireland.  We have no choice but to go for respite in the UK with my aging parents and hope you God we can return to Ireland to a suitable home for my family. 
We simply cannot take any more. 
My health has suffered enough. 

This morning saw email number 4 sent to Simon Harris this year. The previous 3 having gone unanswered. 
He is our local TD and
I've been in touch with him since last year, we can see how much good that has done. 

Anyway. 

You see now why I've not been writing my blogs as much as is like.  I've so many reviews to do.  A whole host of blogs on CBD to write. For now though that's all on the back burner. 

In case anyone is able to help I'll pop the link to our house sale page below but also my gofundme link. If you can help in ANY way we would be grateful. 

Thanks for reading and gentle hugs to all. 
Keep fighting my unicorns ❤

Monday, 26 March 2018

"Just" Fibromyalgia

Your vision blurs and doubles but nothing can be done...its Just Fibromyalgia
You cannot stand bright lights, going around like a Z last celeb with your sunglasses on.. it's just fibromyalgia

You cannot distinguish noise so conversations are hard to hold.... it's just fibromyalgia
Those noises you do hear set your teeth on edge.. guess what?  It's JUST fibromyalgia

Your migraines floor you and your body hurts all over, but you know what?  Is just fibromyalgia
Every day is like you've got flu.  Every step like walking through glue.... Yup, it's Just Fibromyalgia

Trying to hide the grimace from a simple touch, lying in bed recovering from getting up,  you're ok,  it's Just Fibromyalgia

Two words that cover so much "Just Fibromyalgia" yet don't do justice.  Much like "You don't look sick" We should be pleased to hear.
Fibro is the chameleon, for one the battle is fair and days are just a little tough for others days are long and hard and make you think "I've had enough"

But remember you're not alone, there are others that feel your pain.  Together we will keep on fighting,  never giving up. 

So every day think of one thing that makes you smile,  keep hold of that and never forget,  you're not alone,  you're still alive. 

#invisibilityhurts #justfibro
💜💜jojo💜💜

Sunday, 25 February 2018

The Black Dog

Feels like ages since my last blog but it's actually only been a couple of months.
A very very very long and dark couple of months.
One of great reflection and introspection though.

I am depressed.

I'm not ashamed to say it.

For the past 4 years I've been on anti depressants.

Following the birth of my wonderful son I suffered severe Post Natal Depression (PND) and started taking anti depressants.
And was actually well controlled.

My history of depression and  diagnosis of fibromyalgia (plus many other conditions) were two different parts to my story, but I've so often been angered, upset, frustrated when professionals want to focus on the depression, rather than looking at fibromyalgia as a physical condition in its own right.

This fear of judgement causes great anxiety, it's reached a point now where I suffer extreme social anxiety.  I can't even comfortably talk on the phone these days. Even the thought of it, typing about it here now is making me anxious! How crazy is that!

Do you have any idea how hard it is to battle the system and yet deal with the anxiety to just pick up the phone and chase an appointment!?

This is foreign to me, I was never the anxious one. I was the confident competent nurse who helped save lives!!
Now I'm a shadow of that person.
BUT
I'm not beaten.

I'm still climbing out of the hole now but the first step in training the black dog is to acknowledge him.

So even in the face of my battles with health, my partner's struggles with depression, my son's learning difficulties and facing homelessness.

I AM NOT BEATEN
I AM STRONG
WE ARE STRONG

We will get there.
We just have to take our time and accept help when offered and continue to fight for it when it's not, no matter how hard that is.

I know I am not alone.
We all have our individual battles to face, but do you know just how common depression is within the chronically ill!?

(https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml)

It's HUGE!

However we need our health care professionals to see that it is a symptom of our conditions and NOT the cause.
We are depressed BECAUSE we are in pain day in day out, hour by hour, minute by minute.
We are NOT in pain because we are depressed.

My pain is better managed thanks to the wonders of CBD but believe me it's still there, and some days I am still in agony.
This recent extreme cold weather having caused a massive flare.

But you know what!?
The good thing about this clash with the black dog? 

Now I actually KNOW I AM depressed but my pain IS NOT worse because of that.

To me that's a HUGE affirmation. it proves to me that what I thought is true. When all those "professionals" choose to gloss over the condition and focus in on depression as the cause to all our woes.

I shall continue to battle and share my story.

So please if you know someone with chronic illness.

Don't tell them to snap out of it.

Don't tell them Its all in their head.

Take the time to LISTEN and be there.

Help them make that phone call maybe?
Write that letter.
Go with them.to their appointment.

On that note I'll stop babbling, once again thanks for reading.

Sending gentle hugs to all ❤️❤️❤️❤️

Sunday, 21 January 2018

Waking up

Woohoo!!!

I'm finally off Amitriptyline!!!!
I've been off it a week now and despite still getting over the flu,
I'm not joking but it feels like I've woken up!!!

I've been trying to get off it for so long but my nerve pain always flared.
That drug really did turn me into a fat zombie!!

Amitriptyline is an old school drug (originally an anti depressant in higher doses) and is often the first thing thrown at us fibromites as it can dampen down nerve pain.
I can say yes it did do that, hence why I stayed on it so long,  but it also made me extremely drowsy. Thanks to my chemical sensitivity I could only tolerate a small dose so I never really twigged with the insidious grogginess and the intense carb cravings. Sugar in particular!
Sugar, as many of you know is so incredibly bad for us so I was just making things worse!!!!

Don't get me wrong, I'm not cured, I'm still writing this whilst lying in my bed but my brain has woken up!!! I can't tell you how happy this is making me.

These pharmaceutical drugs get pushed at us so easily and yet they can do so much harm. We trust our doctors, of course we do, they're the experts BUT with an illness like fibromyalgia we need MORE.

We need vested interest.

So many of the so called experts still harbour doubts about fibro because it doesn't show up in standard testing.
No x-ray or blood test will tell you anything.

We don't get functional MRI scans that would actually show them that our brains are working differently. Firing way to much, our central nervous systems in overdrive.

We don't have our Substance P measured to demonstrate that our pain levels are 10 times higher than a "normal" person when experiencing the same stimuli.

BUT all that aside.....

Thanks to CBD, (cannabidiol) which is one of many wonderful cannabinoids found in the cannabis plant.

I've now come off {over months mind you}:

Oxynorm (opiate pain relief)
Tramadol slow release (strong long acting pain med)
Zopiclone (sleeping tablet)
Lyrica/pregablin (nerve pain med)

In addition
My doses of standard tramadol has more than halved.
My dose of anti depressants has halved.
My migraines are also much less frequent.

CBD is legal but underutilised.
Our medics are quite frankly ignorant about it. When in group we hear from a member that's had a positive experience after an appointment we all get so excited!! Maybe the tide is turning.
We need access to WHOLE PLANT CBD without being judged!!
It's reefer madness gone insane!!

I could go on but you've done well to read this much so I thank you.

My eternal thanks to #cbdbrothers they've given me my life back.
I dread to think of the dribbling mess I'd be if I was still taking all those chemicals.

Anyone wanting to know more about CBD we've a support group
CBD consumers group UK/EU
(Be warned though we don't allow bigotted trolls in)

Sending much love and gentle hugs to you all. ❤️❤️❤️❤️❤️

Sunday, 31 December 2017

"I'm tired" the biggest understatement ever!! Up there with "I'm sore"

As this year draws to a close with my foot firmly up it's arse to shove it on its way I just about have the energy to write this blog.

It's New Years Eve. It's 6.30pm and I'm in bed, today has beaten me, I've had a little cry at the effort of climbing the stairs, I had a little cry at the effort of eating dinner that Brian prepared. I am beat.
Now I'm lying on my bed trying to formulate sentences.

(I tell you it's a good job pen and paper isn't involved these days because already there would be a pile of screwed up sheets on the floor!!)

You've heard me talk about the pain myself and fellow fibro warriors experience, (I still don't feel I've done it justice though) but I've never really gone into detail on the fatigue element.

You know what it's like to be tired yeah? We all do. I remember being tired. **Insert manic laughter here**

I'm going to TRY to explain the fatigue that comes with Fibromyalgia or Chronic Fatigue (or if you're especially lucky like me, BOTH).

Right now, I'm lying on my back.
The simple life sustaining act of breathing in and out is taking effort and energy.
That's something I can guarantee I NEVER even THOUGHT of when I was well.  It's an autonomic bodily function, our bodies are designed to do this without conscious thought.
This "work of breathing" is all I can handle right now.
Hence lying on my back. I cannot sit in bed and do this. Not only because of my pelvic pain, but If you add in sitting in a chair, you have a recipe for utter exhaustion.
The effort it takes to keep your body upright, your back aligned, your core muscles engaged. These things take energy we shouldn't be aware of.

Add to this mix the pain, the nausea, the vision issues, the over sensitivity to stimuli you can see why we find the actual act of living to be overwhelming.
The body is always aware of something. You can never just BE.
There are many of us that have no desire to see the New Year in like days gone by. The noise, the crowds....ugh makes me shudder at the thought.

But you know what? I still have things to be grateful for.
My partner certainly didn't sign up for this but he's worth his weight in gold I can tell you.
My beautiful son, my reason for being, the reason I'm still here.
My my online family, were it not for fibro I would never have met these amazing people, I would never have got involved with CBD and the fight for access to Cannabis.

This has taken me an hour to write and in all honesty I could say more but I'm brain dead.

I'll say goodnight and goodbye to 2017.... You've been SHITE!  Lol

If you're heading out have a great night and embrace it!! Seriously, enjoy it, realise how lucky you are.

If you're staying in, you know what!? That's ok!! Don't feel bad, don't feel pressured, do what YOU can cope with. Get cosy, stick a movie on, (if you're especially lucky it won't be Minions for the #5378th time) have a tipple of something you fancy.
Don't over do it though, let's face it you don't want a hangover on top of THIS 😂😂😂😭😭
Sending much love a gentle hugs to all. ❤❤❤❤❤❤❤❤❤

On that note I'll say goodnight and HAPPY NEW YEAR!!!

Remember #invisibilityhurts so share share share

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 ❤❤❤❤