Never enough hours for sleeping

I can't stop sleeping. If you'd asked me 5 years ago would I like to spend the day in bed, I'd have said hell no.
There's too much to do and see, places to go, sleeps for the weak, I'm a long time dead to sleep then. You get the gist.
Now, I've not the energy to even contemplate doing things.
I am sleeping in until 1130/12 pm as a rule of thumb now.
I wake in a mindless stumble around 7, take my morning meds, lay back down and I'm gone again until lunch.

I'll then even sleep for an hour or so more if I've no appointments etc planned. If I do make it downstairs, I often lay on my pillow and go back to sleep again with the dogs!

I'm sleeping more hours than sleeping beauty!! I'm waking up like the beast however!

No amount of sleep is enough to make me feel refreshed or like I've charged up my batteries.

Weirdly enough, I'm incredibly envious of me 5 years ago.
I'm missing being that full on, enjoying life and doing things. Even work.

All I want to do is lay about, eating chocolate and shutting myself off from everything. I just want to be me with me. I dont want to keep pretending I'm ok to stop people fussing. I'm doing more harm that good that way.
I just want to be allowed to be miserable without the comments of being a grump.

Pain is the biggest factor to my moods. The more pain I'm in, the more moody I am. Which means the more people poke fun he less tolerance I have and that makes me more grumpy.
Repeat.

I keep trying to focus on my mantra of I've got FND, FND doesn't have me.
Lately it has though. Its taken everything and changed everything. There's not a bloody thing I can do about that :(
Is it any wonder I'm getting so depressed!?

I'm seeing a pain psychologist at the end of June. I've no idea what that entails or what I think about it.
I've v little interest in anything of late. Another red flag warning of depression. Taking hold, smothering me like a vine weed does in your garden. Until it chokes you.

Heads too fuzzy and body too fizzy to think much more today.
Screaming child in sainsbury earlier has set me off on a v bad day nerve pain and shudders etc. Back in bed. My own little world. X

Im meant to be getting better, not worse!

Im sure this is a statement many a FND'er can relate to, heck, Im sure its something a lot of people would say and feel whilst they live with a chronic and debilitating condition.

So yes, in the eyes of the medical profession, I should be getting better.
However they acknowledge and are watching me get worse.
My GP is quite alarmed by the decline in me from our last appointment Mid April, just before I was given the news from the Neurophysio that I had FND.
She saw the tremors and shakes I have and the weird shuddering sensation I get which makes me shake my head and trunk of body and let out a aaahhhhh sound (LOL why cant I give out a better noise than that, this just encourages giggles!)
Its like lightning flashes through my body from head to tip toe in an instant and BOOM electric blast along my nerve pathways and then a shudder which is the only visible sign of how it feels.
She's told me she will out a note on my file, if I call I'm to tell the receptionist I'm in trouble and she will either fit me in or get the Dr to call me.
That was a huge relief and meant a lot.
She has also started me on pregabalin, 75mg bedtime for 4 days and then add in a morning dose.
So far so good I feel. It will be up to 8 weeks before I feel a difference.

As a side effect or pure coincidence, I had a spell on Sunday where I was twitching and kicking out, arms flailing about and head jerks for about 3 hours over night. I was exhausted when I woke up and felt I'd run a marathon, on my hands and knees!

Tuesday I had the worst episode yet. Husband was out, my son was home with his gf and they were going out to the park whilst I made a chili.
I said I'll text when halfway thru and you come home and drain the rice and dish up.
I can manage to stir the pans sitting down.
They left and I went into the kitchen and stopped and stared.
The pack of raw mince was like looking at a rubix cub and trying to work out the method of matching all the coloured squares up. Impossible!
Sure enough I had forgotten how to prepare and cook this meal.
I became frightened of losing a memory, of losing something so important ,yet such an everyday action. 
I just looked at the mince and could not work out how to make it into a chili.
I began to panic. Anxiety grabbed my throat and made my heart beat faster.
My head was pumping and pounding and next doors child was screaming and kicking a ball against our fence causing me to jump and panic further.
I started sobbing, big grief stricken sobs from the bottom of your belly.
I slumped on the floor holding my head to try and stop the flashing images of mince, pans and veg as my brain tried to connect the things together.
My dog began scratching at the stair gate and howling. He snapped me out of my bubble and I went and sat with him on the patio doorway.
He came and sat as close as he possibly could and out his head up on my shoulder.
I text my son to come home asap and he text me all the way home saying he was nearly there.
He ran in and gave me the biggest hug. Like we switched roles and he was my parent comforting his daughter. I felt so protected and safe now he was home.

We also found I had left a pan on and has subsequently burnt a pan of rice into some type of charcoal mess!! I had no idea it was on or even burning.

When husband came home later that night and I told him what had happened he has banned me from using the oven if no one is home.

I feel so useless and dumb. How can you forget how to cook? It was like a light switch went off.
I'm hoping this is meds related.
I'm also being so forgetful in everyday things.
The brain fog and muddling words is back again.
Aren't you meant to come out of a flare up, in order to have another?
I feel one flare is merging into the next.

I dont feel I'm improving. Quite the opposite. X

Black clouds on the horizon.

Not a weather announcement. Its how I feel this week.
I'm finding the dark feelings are becoming more frequent and intense. I still joke and smile when asked if I'm depressed. Me, depressed? No no, I'm too stubborn for that. I'm too strong for that. I tried being depressed, its not me.
I've rehearsed it so often it comes out my mouth so convincing that even I believe myself!
Why do I do it?
I don't want to be labeled as suffering a neurological problem and depression being the key element they focus on.
I don't like admitting I'm not a strong as I thought I was. I don't like losing.

FND and chronic pain has stolen a lot from me, I dont want it to steal my mind too.
My identity has gone, who I am has gone.

Fatigue and pain has increased a lot this week. I'm finding myself weaker and less able to do things I could do last week. Getting up the stairs is getting harder again. I got stuck last night as I just ran out of energy and my left leg refused to co operate and move so my son came and rescued me and helped me back to my bed.
Ive also been having strange attacks of some form of episode?? I get intense pain and fatigue in neck and shoulder muscles. Followed by a cramp feeling. Then heavy arms and I need to lay down. It passes after about 30 min's. Its happened 3 times this week. The headaches have returned too.

Could it be due to attending the job centre for a back to work support interview and neuro physio two days in a row? Both utterly exhausting. Both entirely worthless. More on them later. Eyes burning and head swimming.

S x

Hoops

Jumping through hoops. That's exactly how it feels when trying to fulfill all the hurdles I have to overcome in claiming benefits. Not just benefits actually, but life in general. Nothing seems easy. Or straightforward.

I had my ESA assessment last week. Its was nerve wracking and stressful. Far more so than the PIP one! After a strained commute to the job centre at rush hour in the morning I arrived 20 mins early, I like to be early as opposed to cutting it fine, reduces stress. 

Getting across the one way system was harrowing! the nearest car park was across 6 lanes of traffic and two sets of traffic light islands. Due to this my mum had to come with me as I would never have got across the road due to poor kerbs and effort it took to get over.
Im finding this is the case when I want to go anywhere. My chair is fab for weight to get in and out the car, but to get up kerbs and even some door steps in shops I need someone to help tip the chair and get over. So im not quite as independant as I first anticipated. 

Back in the assessment place. It was empty when I arrived, that was good I thought. too early for drunks and nasties. Alas no. they soon began to flock in, I was terrified my ex, my sons "father" would walk in. But he didnt. 

The whole thing took over an hour of questions and examinations. I was shattered half way through and found it hard to keep up and nodding and shaking my head but not really knowing what I was listening to. I had mum and a support worker from our local hub and they were v good at keeping up and helping me get my point across. 

She agreed I have spasticity in my legs (the jerking and trembling on moving) and that I do clearly have problems. She also told me of another lady she had in a short while ago with very similar issues and she was going for in patient treatment at a hospital in london and recommended me to go and try it also. 

Now I am just waiting to find out the results of her report. It could be up to 4 weeks. 

I then had pain physio in the afternoon and was beyond tired that evening. The pain physio was truly wonderful. she totally understood. She was v kind. 

I see her again next week. I am keeping a diary for 2 weeks for her to see how I am and what I can/cant do. Shes a keen advocate of pacing. Im not sure how much more pacing I can do without coming to a complete stop! 

Tomorrow I have the neuro physio. Mums coming with me after a disgraceful appointment last time. She thinks she will have me jogging this visit!!! I can hardly walk in a straight line let alone jog ffs! 

Then thursday I am back to the dreaded job centre where I have to attend a back to work interview....Id like to see what kind of job they will find for me. This again is at 9am. I will need my mum to come with.

so the hoop jumping continues! 

A bad mix

Fatigue and envy. A bad mix, a toxic mix if you will.
Envying peoples lives and wishing yours could be as exciting or adventurous, experiencing different achievements and goals.
Yet being so weighed down by fatigue all you can do is watch on from the sideline, or remotely in the palm of your hand as you swipe through peoples lives on fb etc..  

Today I am bored. I've forgotten what boredom feels like if I'm honest. I don't particularly miss it truth be told, but I guess my days are spent relatively 'busy' in the sense I'm never doing nothing, wishing I was doing something. Or I'm not sat about with nothing to do. Surprising really after 9 months out of work!

Each day consists of various goals and to do lists, no where near as exciting as things I see others doing.
If its not hospital or Drs appointments, its assessments or form fillings and postings and prescription management. Frustratingly I am out of sync with 2 out my 5 meds, this means I'm often either putting in a script a few days after I've just picked up. I can't get back on track or they suspect me picking up too many meds. I discovered earlier I'm not entitled to any help with prescription costs despite being unemployed and unfit for work. Rather odd given most are unfit for work through medical reasons and require medication. If I was on JSA or tax credits I'd be entitled... I spend over £40 a month on medication and that's just the prescription ones. I buy various vitamins, over the counter drugs too. Soon mounts up as my largest out going a month is my medication.

I'm going off on a tangent, my days, that's what I was writing about.
I think today just screams out as a boredom day. Weather is pretty rotten. The dogs are lazing about. Everyone is tired and has a real CBA attitude.

I joined husband on the food shop today. I took my chair as on a Sunday more often than not I have to wait for the sainsbury chair to become available, so I was able to get in the store without feeling I was gonna drop down from exhaustion, no blue badge means parking furthest from the store currently.

After wheeling up and down each aisle I am weary and by half way round my brain is mush and here's no point asking me a question as you won't get an intelligent reply!

Right now I could happily have a nap. But then it upsets my night sleep so I best not. Ive got a beef brisket in the oven and it smells divine. Husband is on chief lifting out the oven duty and I'm on ladle duty.

The sun is beginning to break through the grey clouds. Maybe the boredom will go with it? If nothing else, I'll go sit in the garden and admire this cheery little flowers. They brighten up the day.

X

Brown envelope's

My last week has been consumed by brown envelopes falling through my letter box.
Ive been awaiting my result from the DWP on the PIP assessment I attended a few weeks back.
I had a phone call from them last Friday, to go over a few more questions and confirm a few of the answers and evidence I'd submitted, like dates I'd been in hospital. All the info I gave both prior to the assessment and on the day of.....
She told me I'd have an answer by the end of day and to expect a reply in the post within 10 days.
Every time I saw someone outside I hoped it was the postman, a few days passed. Bills came, election leaflets came (and went straight in the recycling bin!)

Weds (I think) yet another brown envelope arrived.
I opened it, almost with my eyes closed.
It was another letter asking for another sick note.. 

I emailed my local hub group. I think they are along the lines of the former disCass team.
They provide advice and support on a vast array of matters and I asked for their advice on what was going on with my ESA claim.

The following day the post arrived with a heavy thud. Several brown envelopes....
Shaking I sat on the sofa and started opening them.
The first was my award letter from the PIP. I'd been accepted. Or rather, I failed the assessment in the way an able bodied person would pass it.
I was given standard mobility component and none for the care element.
I was 2 points shy of being granted it.
I'm looking into asking for a reconsideration into it and I'm hoping I can get a few more bits of evidence from the pain physio this coming week to submit.

The other letters were another asking for a sick note. The day after the previous letter. A letter telling me I'd been awarded the ESA from the 21/02 at x amount and then z amount from 7th April, new tax year I am assuming? But as yet no money.
Whilst opening the letters a lady from the hub called me back, we went through the info I had in front of me and she has offered to come attend my ESA assessment weds.

I also have the pain clinic physiotherapy assessment weds at Frimley hospital. So a busy day for me.
I've filled in their pre appointment forms and the picture of the two bodies you have to draw where you hurt etc. Let's just say there's few places left unmarked lol.

Symptoms wise I'm having an awful few days. I feel full of static charge and painful pins and needles. Not the tingling kind. Stabbing repeatedly kind. My tongue is buzzing, my skin feels goose bumpy and bruised to touch. I keep jerking and twitching and the fatigue has been incredible. I could happily sleep the whole day and night away.
Friday I kept having a choking sensation, my throat would close momentarily and I'd cough splutter and gag when it opened. I'd did so randomly and was awful.

I'm wondering when this will ease, the drs were insistent in I'd get better.  As yet I'm not. But mentally I'm getting stronger. I cling on to that. Its not let me down yet x