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 ❤❤❤❤

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