Learning your limitations

Is something I need to do! I keep pushing myself to do one more thing or just finish this before I collapse. I'm not juggling the fatigue side of things, which isn't turn increases the symptoms side of things and subsequently this affects the fatigue levels. Its a snowballing cycle. One feeds the other in turn feeding the other. Repeat.

I met up with a friend for lunch today, its so nice to socialise outside my bubble. I currently only have my mum, husband and son on a day to day basis to speak with and most of that is done before and after work/college leaving me relying on social interactions online. I miss the face to face feel of things.
But anyway, we went to town and I'd normally go with her and not take my wheelchair just as its awkward asking to put in her car or its usually only a lunch in a garden centre, normally situated at the front of said centre.
But invariably she likes to wander round and browse and I end up texting dh saying I'm in agony and just want to come home.
Once the pain takes hold I can't enjoy myself and I'm counting the minutes until I'm laying on my bed again and trying to calm the monster that is pain.
This then wipes me out for the rest of the day and sometimes into the next.

So yes, today was a lovely mooch around town. I'd taken my wheelchair with us, and it made all the difference. It was however a pigging nightmare to get around. The majority of the shops have a door step meaning I couldn't get the chair over the plinth (?!) There was also lots of items blocking aisles and boxes and 'things' around the tills. All in all it was harder to get about than it was easy.
Quite shocking really given this day and age. The pavements were also SHOCKING! very uneven and cobbled in areas which meant it was a narrow area to wheel along.
Throw in people who wouldn't move out the way or just cut you up or worst just stop I'm the path and then tut loudly if you almost hit them! Also so many hills and lack of pavement drops made it a rather fraught trip. Shame really. My arms were exhausted afterwards.

I came home and then joined husband and the two dogs for a gentle stroll in the sunshine. The wind is incredibly strong today.
This is actually a blessing when walking along as it helps push me, however coming back and having it face on is rather rotten as it makes it many times harder. None the less, I made it, came home and went over for a lovely meal at the in-laws and I drive home.

So I am shattered, not long in and ive come straight to bed. I feel im burning the candle at both ends. My legs still buzzing and ive also had cold left leg from half way up the shin to toes. Little bit concerned over that.

Ive done no physio or exercises today but I shall tomorrow. Today I just need sleep. Ive used up so many spoons trying to just
Have a life and I'm now beginning to suffer for living it as my family and friend does. I forget I'm not as normal as they are.

Right I keep making spelling errors and my eyes are burning. So good night xx
.

Scary flare?

This is more for a reference for myself than anything else, this evening whilst eating tea, my throat kept feeling tight and I was coughing to clear it (ended up inhaling rice coughing so much!)
Finished tea, it was a chicken curry, so soft food.

Went and sat on the sofa, got myself comfy and bam! Deep pain, like sinus pain, in the very top part of jaw, where it hinges with the skull.
This spread along the bottom jaw and was spreading like it was in my face. The pain was intense and I just burst into tears. Poor son and husband didnt know what was going on. I couldn't open my mouth properly to speak and just rocked with the pain, blowing out deeply.

It didnt last long. No more than 5 minutes, in that time I went v hot in the face to touch but I didn't feel hot. I wasnt flushed either.

After that it just ached to move my mouth but it loosened up in about 15 mins. It was then just like a wisdom or tooth removal ache u get after being at the dentist with your mouth kept open for ages.

I *think* its because I have been grinding my teeth constantly. My teeth dont feel set in my mouth and then I bite down they "sink' into my gums. Then just as u do when u have a sore or loose tooth and u keep sticking your tongue in it, I keep biting together. I'm also sucking in my cheeks like you do when pretending to pull a fish face?!! I do it without realising. Its almost a 'tick' ive developed.
The dental hygienist I saw on Monday has urged me to see dentist asap as I am chewing the inside of NY bottom lip badly (when I bite teeth) and its left deep indentations in the lips. Same with the top lip. Ive also bitten the cheeks to but not as bad

I can't help it though. I'm constantly gritting and biting my teeth together, I'm also picking my lips to pieces, ive two big deep sores where I just pick til it bleeds heavy, now it hurts to eat certain foods as it stings the sores.

Husband has noticed ive increased this obsessive repetition of picking and biting :(

I feel ok now, just aching jaw up near ears.

I've over done it by miles today. I think ive used the next 3 days spoons up let alone today's! Tomorrow IS going to be lazy. Once ive done the food shop....

BST begins in 3 hours :D I love the lighter nights and dawns. All the birds singing. Pity the weather can't pick up a little again.....anyways I can feel the meds starting to make me sleepy and my arms and fingers ache typing this in my phone. Xxxx

Spoon's

Ive found a wonderful analogy on what it'd like to live with pain and fatigue vs someone without either.
It explains the way we (the 'sick', dont like saying that but brain fart has meant its the only word I can think of currently!)

Having to weigh up the choice between doing tasks, menial and well as more complex, and work out if the outlay and effort on a physical and mental (and emotional depending on the task) level is worth what you get out at the end.

My dog does this, no in fact the both do it!! Maybe I'll nickname it the beagleism! Is what I tell them to do, or not do in most instances, worth the reward at the end. If they carry on as they are will they get a better reward or if they do as asked will I give them a better reward.
For example, asking her to recall to me. Have I got something (treat) thats better/tastier than the smells/items/freedom she's got if she carries on running around?
If so she comes, if not, she buggers of howling as if to say stuff you :p

So yes this theory explains very well how each everyday task is a spoon. Once you start spending your spoons your pile of reserves diminishes. Until you are left empty handed. In our case, exhausted, in agony, causing a flare up of multiple symptoms.

Now imagine that every day. All day. Forever. I dont think I'll look at spoons the same way again lol!!

I also think it highlights one of the harder consequences of this disorder. I'm pretty sure ive mentioned it in previous entries. Where ive spent the last decade and a bit always on the go, busy busy busy, never spending quality time with family, always working and to go from 100mph to 5mph is a huge change.
Initially its nice to rest. But then cabin fever kicks in, you begin to itch for the mental stimulation of juggling everything.

I used to live by a clock. With my work, each client I had, had X amount of time allotted, if I go over I'm eating into client #2. I had to be very focused on time management. Meals ready by xyz time, meas eaten by ABC time or I'd be late to my next shift.
Days off began to get made into time allotted tasks. I'd have to get up early and do everything by 9, be at the shops for 915, 920 at a push. So on and so on.
It drove my husband into the ground :( it became so stressful living life constantly battling time and making sure I and completed each task.
I never ever allowed myself time. Quite literally just that. I would punish myself for relaxing. I would feel wasteful and useless doing nothing. So I'd push on.

Now I look back and think what a waste. Life's too bloody short. Ive missed family occasions, holidays, hell I even worked 8 out of the last 9 Xmas days and I only sent work this one as I was just out of hospital and unwell. I'll never get that time back again. But I wont waste it again in the future either.

This blog I fantastic for my mind. Its really making the grey matter ignite and light up. Keeping the thing ticking over. Therapeutic also.

Anyway, ive several spoons worth of tasks to complete today, sitting here won't get it done x

Having a beagle kinda day

Odd title, but im having an odd day I think lol.

Ive decided today I will do as my beagles do and laze around. More so than usual I hear!?

Well yeah, I joined hubby and the two dogs on a walk last night round the block. It would take us 20 mins max usually, once upon a time ago.....Last night it was 87 minutes, how do I know this?? I paused the programme Fortitude which started at 9pm and when I came back it said 87 mins paused so there you go. Ridiculous amount of time but I DID it.
Hence the slow lazy day today.

That said I have already driven son to college and I need to empty my car of everything (how much stuff can u fit in one little car!!!!) go back and collect him from college at 2:45 and then take the car to the valet people and get it properly spruced up ready to be handed over, gulp.
Ive then set myself the task of cooking a roast tonight, so reading back hardly a quiet day is it!

I had another letter this morning from ESA people. They were claiming I still hadn't sent in a sick certificate fom gp for the weeks after 27th Feb. I had sent it in and so as this was the 4th letter I have had from them I called. Im shocked I rang and was only on hold for 3 minutes and it was all dealt with very quickly and within 10 mins done and dusted. It was an automated letter whilst they were processing my claim and she said they still haven't set up the claim (they had had to rebuild it?) so she said i will get another letter in the next day or two! BUT they DO have the forms so dont worry.....famous last words???


i have joined a group on FB for the FND forum. The stories and support is incredible. Its equally horrifying how much people have to go through to be believed and "treated" Its opened my eyes to just how little the medical field knows about the human body at times and how hard it must be for people to go years fighting for answers? I think thats the hardest part of this illness, and maybe others also. The need for answers and having to fight and claw your way to them.

A cousin posted this on FB and I found it very useful, I especially find part 2 and 8 are close to me and my heart. I am lucky that for the best part hubs and son are v good with me and do everything they can to help me.

Ill have to leave this here for now, as I must go and empty the car and pick son up (this has taken an hour to write!) and my dog is laying curled up in my lap and meaning on my poor bladder which is beginning to feel a bit full!!

TTFN x

Vella doing her best at keeping me resting <3

FND

Ive been googling a bit more on this FND or FNS depending on which country I think? Ive found a few videos which sum up perfectly this whole disorder/syndrome, I dont know the correct terminology??
Some need the volume down as they have annoying loud music/songs lol

Functional Neurological Disorder

The hardest hitting link. This sums up me. Its the battle you face

Finding people who are like a mirror image of myself is just heart breaking and relieving at the same time. I dont feel alone but I also feel sad others are where I am or in some cases worse that I am.

Struggling today with the black cloud over my head. Trying to get my head around it all, what it means and if its forever. Im fighting to pull my thoughts up but today I just have to let them win. I need to ease off the whole fighting to stay positive and going. Its ok to buckle and its ok to be down.

The most "daft" thing I have found today and I text my mum in tears was its common to have  ahead tilt in FND, for the last 2 years each photo ive seen people post of me in facebook or twitter, my left side of my face looks rounder and more obvious. Its a head tilt. My head doesnt look straight on. For ages Ive scrutinized pics, asked ppl not to post them as i became so aware of it. Now I know Im not nuts. Its daft but remarkably huge for me. Ill link in a pic of what I mean.

I am exhausted today. x

Anticlimax

I feel I'm in an anticlimax bubble. I think after fighting so long and hard for answers to finally have something pretty concrete is both amazing and disheartening.
Like the evening of Christmas day, you've waited all of December for this day. When it comes its over quickly and the bump is quite odd.
I'm thrilled to have something I can label myself under, if people ask what is wrong rather than say 'bad back' which 90% of people joke "back oh yeah me too....." Almost belittling your pain. Or I say my foot forgot how to foot. Its fallen out with my brain. I try and make it lighthearted as a) its not morbid or terminal,in the grand scale of things its rather trivial in terms of the medical field. Although its had a huge impact on my life and of those around me. But b) I have to keep it jovial or I'll be sucked in and never feel I can climb that mountain. I'll never conquer it.

I said to the physio yesterday something which summed it up perfectly.
My pain controls me, my pain is managing me and limiting me in what I can and can't do. I avoid certain things like sitting in the cinema watching a film. A huge no no for me currently, going out for a meal, I can't sit comfortably at a table. Or I wont go somewhere as I know I'll hurt and pay for it in the following days.
I said I want to manage my pain, I want to control it.. I need to take back my body. She agreed that summed it up perfectly.
Hence the pain clinic needing to be involved. As she agrees my current pain management isnt working and my gp hasn't followed through on the Neurologist report in regards to upping my amitriptyline from the current 10mg to 100mg a day. yeah not a small increase, a large one yet gp won't sanction it!
I'm going to write gp a letter just outlining the above from my physio, I dont need to see her face to face for this. Its a waste of her time, an appointment slot and means I sit for up to an hour on uncomfortable chairs in the waiting room.
My gp is never ever on time. The longest ive waited to go in is 1hr 10 minutes! Infuriating when you've grabbed an appointment between work calls and u are now running late. Plus I dont think I can face talking out loud about all this. In here I can say what I want. If I get upset I can close the page for a bit, walk away or google something funny. In the surgery I'm stuck. The thoughts in my head get louder and I get so anxious.

I also can't fully agree that this functional symptoms'disorder' is what I have.
It doesnt explain the long term symptoms ive had. The flare ups of pins and needles in arms, weakness in the arms brushing hair/teeth. The spongy foot feeling. All this goes back about 6 years give or take.
The back pain has always been there in the background. It only ever really plagued me if I was over doing it. Like a shopping trip round town. Lots of walking as hills (our town high street goes up a v steep hill and is cobbled. Nightmare!) And standing about hurt my spine. The pressure would build as that sharp pinch would almost wind me.

In those 6 years I've seen 3 osteopaths. 2 chiropractor's and the pain clinic man for my knees. All told me to seek referral for ortho team as my backs wrong/causing problems.

CFS or fibromyalgia also fits perfectly. The flare ups, the symptoms.

So I can't decide if I fall into this labelling or continue searching for the correct diagnosis (if this one is indeed incorrect)
Its just all to inconsistent. The letters being different between neurologist and me and neurologist and physio. Being told several different causes and often the we dont really know aspect of things.....

I just want everyone to agree on the same diagnosis, formulate a plan of action and to manage this. As I said earlier I'm not life limited in the time aspect, but I am limited in what I can now do.
This time 2 years ago we did a 14 mile walk for the Royal Marsden Hospital. Counting in the walking to and from the event in London we walked 17 miles according to my fitbit stepometer thingy.
This time almost last year (well June) I drove the 400+ miles to Cornwall and back for a weeks holiday. I walked the headlands, stomped around on the beaches and ran around with my dogs. Less than 3 months later I could hardly move my left leg let alone walk properly.

The more I think in terms of that, the angrier I get with my body and myself. At 34 this isnt the lifestyle I wanted. I miss my job so very much. The interaction with people constantly, the aspect of care tasks, being able to do things for people and not give anything a second thought. I miss the busyness I had. The constant on the go element. From 6am til I finished work at 10pm. Now my brain and body just rots doing nothing. Eurgh.

So on that gloomy moany note, I'm going to have a doze. Yesterday has caused a lot of pain in hips and thighs. My legs shake like a wobbly jelly and mum was shocked at the state of them. My back is also killing. So I didnt sleep well at all as I couldn't get comfortable. So the usual black and dark circles I have under my eyes to the last few months have grown larger and more noticeable. I look like a extra in a Tim Burton film!!! :')

X

A Diagnosis???

If this doesnt make much sense its cos my head is rather foggy at the moment. A combination of really being pulled about (in a nice way!) with the physio and being made to carry out tasks etc and pain going off like a siren in my head and the meds ive just taken to try and ease it. 
I am also a snuffling,snotty mess as I feel a lot of things have come and hit me like a bus today. So a good old cry will solve everything. 

I came away from the appointment feeling once again dismissed and let down almost, she gave a different opinion and even the letter the neuro has sent her is different to the copy I got!! 

He's not mentioned the infection at all as a diagnosis. Instead he has said its Functional Neurological (or something functional I cant remember) She wrote down a web address to go home and read and she felt I would connect with parts written. 

I text DH the link to the website Welcome - neurosymptoms.org and after a few minutes I got a text back saying Its me, the entire page is exactly me and everything I have ever said or mentioned. All in one place under one name. 
I didnt believe him but I have sat down and read through all the symptoms and all the knock on effects of each and its like reading things ive posted here, things i have said out loud-Dh particularly pointed out the spasms I get which I liken to the feeling of someone walking over my grave is written exactly that way. 

"Most people have had the experience of jumping or jerking as they are dropping off to sleep. These movements are called 'hypnic jerks'.
Most people are also familiar with the random body 'shudder' that some people get. This is sometimes described as 'walking on someones grave' because of the way it moves quickly through the body". this is what I get daily. Ill link the video of it later. 

It lists everything,

• the eye problems

• gait problems walking with one stiff leg being heavier

• the small steps taken as if on ice

• the left hand side being the more commonly affected whilst the right is uneffected.

• functional tremors

• dissociation and zoning out

• pain

• fatigue like CFS

• headaches

• slurred speech and forgetting words

• Fleeting sensations - including twitches, buzzing sensations, electric shock sensations

to mention just a few! all the above I have mentioned on here previously. 
I cant begin to describe how it felt reading something which people are now thinking fits what I have and that it actually fits better than "infection" I just burst in to tears. Ive said to gp I feel u all think its in my head, theres a whole section on this website that says you feel it is BUT it isnt. Its very real. The pain is real the symptoms are real. 
Its all the symptoms of a real neurological disorder such as ms or stroke yet physically theres been no damage to the brain or nerves. But the brain (for unknown reasons) interprets the body in to thinking it has and giving u the symptoms. 

It also mentions how to deal with people and jobs/benefit applications with this disorder.

• It may be that your main problem is fatigue in which case calling the problem 'Chronic Fatigue Syndrome with functional neurological symptoms' may help define it for everyone.

• If your main problem is pain, calling the problem 'Chronic Pain with functional neurological symptoms' may help define it

I kinda wish I had known this prior to the applications sent off but I will call them tomorrow to update. 

She also pointed out GP really should be following the neuros letter re the medication and up my amitriptyline massively. She said that would make a big difference. Shes also said to ask her to be sent to a pain clinic. So I will write a letter to gp and pop it in tomorrow. I dont see the point of another wasted trip to her when I can just put it all in a letter and ask. Ill keep a copy as well so if this referral or meds doesn't improve I've got proof I asked for it as well as neuro. 

She kept focusing though (this is my one complaint, admit it, you knew there was one coming lol) on saying i waddle like a penguin as im convinced my body is too weak to hold me up and im scared of falling?? I said thats not something ive ever thought would happen. 
Sure my legs feel like jelly but as i said to gp I dont feel ever to the point where i would collapse or fall. But she kept insisting I was adjusting my walk to protect my leg?! 
I said Ive walked with a waddle 5+ years. 
It used to take about 3 miles before it really kicked in with pain and fatigue or by the end of a really busy shift but not once was it fall related its always been pain. 
My knees were sore I walked funny which hurt my back..... nope she would bring up the "dont be scared you'll fall" speech when standing. Even mum tried to explain it but she was fixated on it. The orthopedic I saw some 5 years ago said its my back causing my unusual gait. Hey ho. She was shocked when I told her it was one of the orthos from the same hosp we were in....I also got slightly shirty when she said the pain i had in foot which has now gone has left me thinking i need to walk funny to avoid hurting it ( my foot never hurt) and if I had been seen sooner it could have been corrected before it got this bad......I pointed out ive waited 14 weeks for this appointment and not through want of trying either. 

I dont really know what to make of it all. Ill just keep digesting it I think for a few days and go from there. Knowing what I have going on is real is a huge relief. Knowing it may or may not improve and has turned my life upside down is harder to accept long term.

1. You have something common – you are not weird
2. You do have something genuine – you are not imagining it
3. You have symptoms that are potentially reversible
4. Its not your fault that you have these symptoms
5. But you will need to put some effort into getting better

The principles of rehabilitation in this situation are to recognise that you probably are doing a bit too much on the good days and not enough on the bad days.
Set yourself a modest task, it might be a walk to the shop, it might just be a small job in the house. Make it something that is a bit less than you would do on your best day but more than you would do on your worst.
If you stick to the SAME level of activity every day, hopefully you'll find that after a while, perhaps a few weeks, this SAME level of activity may make you just a little less tired than it did before, or cause just a little less pain.
You will still have days when you feel as if you're "back to square one". But if you're improving slowly overall, thats the main thing
So, Ive been given some more core strengthening exercises to try and do 3 times a day. I see her again on 7th April. In the mean time, who knows! 

changes in the air

This weekend has brought around some changes. 

Firstly and more importantly I feel, we have a new car coming :D I say we, primarily its for me as I am finding it hard to operate the manual gears of my car, this new one is an automatic so takes away the whole issue of my left leg being weak. 

It's exactly the same type of car as I currently own, a Toyota Yaris only its a new car. My current car, Husband has owned since new and is now 10 years old. Its a little used shall we say, it has the obligatory car park scratches that we all incur at some point in time as a driver. It also has begun to have worn parts. 

We had her serviced saturday at Toyota and she needed new brake discs and pads and a few other advisories had popped up and would need sorting in the next month or two. In total she cost £404 :O a bit more than the £300 I'd anticipated for. But hey ho needs must etc. 

Sunday we went back to Toyota and had a really good chat with them about what we need vs what we want and the new yaris was one I had my heart set on. Purely cosmetically really. I like the style and look. I also liked the practicality of it being a similar size, I love the layout and handling of the yaris and all in all they are a super car to drive. 

After umming and arring we agreed that a new car would be best. 

The sales assistant (or showroom assistant I forget his role) was very lovely. No hard selling or pushing for extras. In fact he pointed out things I wanted as extras came in as standard and didnt really offer much more than what I already had. I wanted rear parking sensors so if my eyes are playing up I can judge the distance better, he pointed out it has a rear view camera (fancy!!) which in effect rendered the sensors obsoleet. He could have pushed me to add them at quite a cost but steered us away. Thanks Toyota man :) 

A second hand model would have a 9% apr, new was 0%. Second hand was only £2000 cheaper overall. 

Second hand would com with what ever the previous owner had added. So comes as it is. 

Based on this we've gone new. No car tax to pay ever and being a hybrid was also a big bonus. I'm digressing now! 

So yes, we've traded in my car and thats gone on as the deposit and the monthly repayments are v low. All in all a cracking deal. It now means I have an automatic that opens up so much more in regards to being mobile and independent once more. 

This morning I drove my son to college, its a 15 min journey give or take. About 3.5 miles away (thanks google maps) so not far. But constant traffic lights and road works, morning commuters and is a pain in the bum for needing to keep changing up and down gears, holding the biting point, which in current car is the highest point. Numerous MOT and services have all mentioned this but rectifying was too costly. This means my leg weakens and I end up in too much pain and not 100% focused. Its also hurting my hip and sitting in the position isnt nice either. So removing the manual gears eliminates one part, leaving me in less pain and in theory stronger to then do something once ive driven to location or back home. 

Ill be sad to hand over Maisie's (my car) keys but the new car is a physical reminder of change and moving onwards I think. Its all about adapting and changing with whats going on. 

In other news, I also received a letter from DWP. My PIP has been received and I will be seeing a member of ATOS for a health assessment at some point in the next 16 weeks, they have warned it could be longer. Im not very hopeful over this, a lot of bad press surrounds the ATOS and the whole system. 

I know they have to weedle the blatant forgers out of the benefits system, but it feels its to the detriment of genuine claimants at times. 

It now feels like I've an anxious wait to see if I'm 'successful' in being unable to work. That sounds such a oxymoron. 

Other stresses I'm currently going through, ive dealt with the CSA (Child support agency) once again today. I filed an official complaint with them last week over the useless handling of my claim against my sons father. 

He owes me currently just over £9,000. Yes NINE THOUSAND, thats not a typo!! 

In a claim which has been on going for over 6 years, we've been seperated 11 years in October. As yet ive received nothing. He works cash in hand, moves house, tells lies on where he really lives. Ive found out where he lives (same house he's grown up in!) Found out where he works yet the agency seems powerless to act.

We've been to court three tines and each time the judge awards in his favour of no action to remove wages directly or jail. If he owed this in council tax he'd be in hot water by now..... Frustrating doesnt even come close. Right now, knowing I'm owed £9000 is just infuriating. That could keep me afloat for a long time. My son needs so much, ive oaid through the nose for every school trip, he's been to Italy skiing, a geography trip to Iceland, numerous UK trips. It all adds up. I'm the one who's shouldered the cost. I worked extra hours to make sure he didnt go without. Yet his father, nothing :( 

Anyway, I must upload this as my ohone is almost out of battery. 

I'll update tomorrow as I finally see the neurophysio department!!! Ive been waiting since December. 

Running the gauntlet of the DWP

Good morning, I have had a better nights sleep last night and woken feeling I've slept which has made all the difference.



I filled in the ESA forms yesterday, gosh that's long winded but much simpler to fill in. 
It will ask about your dexterity and explain things you can and cant do. What helps, what makes it worse for example. So I said I can hold a pen and write although writing is wriggly due to shaking hands (its obv from my handwriting filling in the form lol) but I cant do a button up or pick up a 5p. 

The PIP form is much more open ended and subject to interpretation. Such as "Can you prepare a meal?" I said to the lady what do they take a meal to mean? I can peel a banana and open a yogurt and crisps is that a meal? I can put a ready meal in the oven is that one? 
So we wrote I can cook a roast dinner as each part can be done of a long time scale. I peel veg on the sofa, Chop them sitting on a chair in kitchen and turn the hob on. I cant fill a pan up with water and I cant lift a tray out the oven. Its all done in stages that I can rest and sit down in between. Once its in the oven there's not much to do for an hour so its do-able. 

I said however, I couldn't stand there continuously cooking in the kitchen such as something needing stirring like a risotto.
But someone may never cook a meal anyway as their partner does it so just ticks NO, but actually means yes, but they don't. Hence the interpretation.

I also sent off the ssp1 form to my boss the CAB gave me and a note asking her to fill and send back asap as my esa forms wont go any further without it. Today sods law was in full swing, I got a copy (finally) back from her so she will get mine today lol. Opps. Regardless its another form I can send off today and walking to the post box on our estate is a good excuse to get me up and doing something. The fresh air will do me good also.

So my income is in the hands of the government.......that is a daunting thought  
I have no idea how long realistically it will all take also. 

Thankfully DH income is enough to cover everything so we haven't got a financial worry, all the bills will be covered and we have enough for food etc. It means we cant buy things on a whim as we had got used to with two good incomes a month. But compared to many in the benefit waiting line, we are 'comfortable' and don't have that as an added worry. 

I said to the lady at the CAB how scary the filling of forms is, I like to consider myself a savvy person (on a good day) and I found the questions misleading and baffling. 

If I was doing it on my own I would probably give up. I can see why people do. 

I can see why people are left with nothing as they cant cope with filling in all the tedious boxes. 

Its a week away now until I see the Neuro Physio, I am really hoping they will be able to tell me more than the other professionals but I am trying to not pin too much hope on them. I am hoping they will see me walk and be able to tell me whats causing the problems with my pelvis, osteo says my pelvis is fixed and hips don't move independent of my pelvis, they are rigid and my pelvis moves rather than my hips if that makes sense. So they will see what's going wrong and be able to work on this.....She says with baited breath.....

Really enjoying writing my blog, its helping keeping the grey cells firing and is something to look forward to whilst I'm home alone. Tuesdays are my worst days as DH has been home since Friday night and son is at college 8-5 today so I'm home alone all day. x 

Another Week Ahead

I had a poor nights sleep Sunday night. I can see why.
After pushing myself, or stretching myself to do too much in too short a space of time, my body fought back.
There seems to be a battle of the wills. Between my stubborn streak ( I will call myself this numerous time I am sure throughout this blog. Its my strength and weakness) and my can do attitude. I am, at the best of times, my own worst enemy. Equally of strong voice is my spine and its constant whinge in my inner psyche. It can either whisper in my ear last thing at night, Im hurting. Or it can yell so loud that no other voice, thought or feeling can over ride it.
At 4 am this morning, I found that voice screaming so loud, I laid there trying to describe pain in a real format. The only likeness I can give it is this.

Its like standing in a arcade, the type you recall as a child. Loud machines everywhere you look, alarms wailing and bells ringing to make everyone look at the winner.  
Each machine is lit up in neon colours, huge light bulbs flashing and blinking, almost trance inducing. 
No matter how much you screw your eyes tight shut and cover your ear's, all your senses are overloading. You cant escape the noise all around you. Even if you curl up tight in a ball. Its still there, waiting for you to open your eyes. 
Thats what chronic, unrelenting pain is like in your mind.
Its all consuming and you can't shut it off or out. Its exhausting. 
There's neon signs flashing, arrows pointing inwards screaming pain, its as if you a third person looking in.

Maybe its the wine I had with dinner talking, maybe its the hours ive sat here thinking of ways to describe it? 
Dh is snoring beside me, for once I'm jealous rather than cross. I wish I was asleep. 

Yesterday I joined husband and the hounds on a walk, a gentle walk in the sense of gradient and difficulty rating. It would once have been a 30 minute walk, we would have whizzed round and not stopped along the way. Only this is now, I dont whizz anywhere anymore. This is now a difficulty rating 6/10. 
The nemesis I face are muddy paths, soil which is soft and DARN my brain fog has just wiped my entire train of thought :( This I find infuriating. I will try and spell it out in the hope I either make sense to the reader or I remind myself the word I am aiming for. The ground is unguessable.......gageable? predictable?. I think thats the word.  Trying to walk on ground that isnt steady under your feet. 
When your feet arent very steady at the best of times, as in ever! Even a wood floor can feel uneven lol and I go wobbling side to side and I can trip over thin air. Yes really, I can. Its quite a talent!

Then theres the fact the dogs dont understand I have one speed now, they can just be walking and they are soon so far in front of me if anything came or they saw something Im nit near enough to intervene. Which means I push myself to keep up. Having a group of 12 pensioners marching past you with their walking poles and cagoules is disheartening, and embarrassing.  We are trying to come up with funny answers to the usual questions/comments of if you go any slower you will be going backwards, yes cos that is HILARIOUS! Are you ok? Or I thought i walked slow......

Then there is the pain bubble. My husband has mentioned I go off to another planet. To me it feels im in a bubble. Nothing going on around me registered just the fact im in pain. As I said earlier it takes over every thought in your head and is impossible to ignore. I was shuffling along finding myself panting and blowing out the pain like I did in labour with my son!! I will tell you what, it works! Focusing on the breathing helps switch your attention. Theres no wave of pain like a contraction though. Its just plateaued...........................................


So when we got home, I laid down in bed after taking my meds and waited for them to take effect. They didnt. I then had to prepare some scones and other bits for mothers day and we were going out to visit the mums so I didnt have time to rest. By the time I got to my mums I was pale with huge dark circles under my eyes, I just sat at the table with my head on a pillow barely aware of the conversations going on over and around me. 
I then spent too long sitting up in the car on the drive (25 mins) although heated seats are a blessing. pure relief having a hot water bottle feeling all down my back and bottom. The meal at mother in laws was the longest Ive sat at a table since december! 

When I got home I went straight to bed but couldnt sleep. The sciatica was horrendous as was the pain in just touching the bed. That awful flu like ache in your bones that you cant get comfy with.
As I had drunk several glasses of wine with dinner I decided to not have my night meds as they say do not take with alcohol not just avoid so I only had paracetamol!

Hence they poor nights sleep.
I dozed off after 130 am and was wide awake by 340 am. I stayed awake browsing the world wide web until 5ish Husbands alarm went off from 6am. So today has been a blur. I thought of dozing during the day but then I worried I wouldnt sleep well tonight.

I went to the Citizens Advice Bureau today. But I will post more on that tomorrow. I wish to go to bed now and my eye sight is straining on the laptop. So good night and wishing everyone a pain free sleep x

A huge introduction for my first post. But its such a complicated history that it needs to be to make sense. This is predominantly going to be a blog for me and my thoughts and may or may not make sense but its an outflow for me and my emotions and fears. It will probably also follow my journey to attempt to claim some form of benefit. I never realised how awkward and disheartening that in itself can be. 

Just today Ive had two letters one a ESA form and another a health assessment and both want a copy of my original sick certificate (no photocopies allowed) and both want it within the same time scale. So how do I do that?? Why cant one department send a copy of their copy to the other department? 

So yeah, I find myself with very poor mobility and lower back pain which has seen me out of work since Sept '14, with a brief return to work in Nov '14 before I lost the use of my left foot in december. That brings me to where I am today. Now for the long history into me and my body! 

Painful lower back when upright began in my mid teens and saw a chiropractor for a couple of years for that around early '90s.

Along side this knee pain became an on going symptom/side effect, hurts to have knees bent when kneeling and crouching on floor hurts within 30 seconds of pins and needles in feet and legs which increases to heat.

Damaged lateral ligaments in both knees early 2001 (ran up a flight of stairs left knee gave way, on crutches for 6 weeks and did the right leg in trying to get in a car on crutches!!) crutches for almost 3 months.

Physio at the time got the consultant orthopedic to do an mri which showed also small tear in meniscus. They noticed my knee caps where out of alignment also and was creating a new groove under knee cap. Repeatedly had knees taped up and they gave up after a while trying to adjust the knee caps. They put it down to Chondromalacia Patella and said re adjustments to life would make it bearable..... I was put on various meds over the years, co codamol, naproxen, gabapentin. noretriptyline.

Over the next 10 years I put up with knee and back pain. in 2012 I saw the pain clinic who gave me a left sided injection of steroids and anti inflametaries in lower back and in 2013 he did both sides a lumbar sympathectomy and burnt/cut the nerves to knee.

in the last 3/4 years Ive seen 3 chiropractors who all told me to go to GP and be referred to an Orthopedic team for the back pain. I also saw 2 osteo's who also said to speak with GP about it. Saw GP 3 times about the pain and what other professionals had said and each time refused a referral/referral was never sent.

I can remember around 5 years ago at work I would have trouble with my hands trembling and writing care plans. Difficulty changing bed sheets/duvets as fatigue in arms. I also had the odd sensation of not feeling my left foot below my knee and feeling unsteady on it when going up and down kerbs. At this point I was walking around 15 miles a day both with work and dogs. Mentioned to gp at a review and she just said to monitor it.

1.April 2014 my hands began to buzz and tingle as if I had clapped my hands together very fast and hard. If I put them in water-hot or cold it was like they were burning. Had trouble again with fatigue in arms with showering clients and making beds.

some time in May '14 my left leg began to buzz like a mobile phone was going off in my thigh. This continued daily to October. It was worse when driving and holding the biting point and Id often stamp my foot in footwell to get the feeling back-it wasnt numb as such but asleep??

Along side this my memory was getting worse, couldnt remeber door codes, dates of birth for clients and names of medicines etc.

Never had that in the 8 years previously in the job. I also began muddling up words and saying the wrong word completely not just a similar word but one that made no sense. I also stutter somewhat trying to find the right word and can forget what I am saying mid sentence! Husband notices this the most and I do it daily. He says I get a brain fog. I am more aware of it when I am tired.

saw a Gp in the August '14 she said I needed a neurologist and orthopedic referral. She first noticed delay on reflexes and moving toes upwards on Left foot

Sept 6th had mri, I had been on a dog walk that day and found it very difficult to keep up with the group of us, even a lady who was 3 days overdue was way ahead of me lol!!! First time I really noticed a struggle walking a distance I had done many many times previously.

Sept 7th woke up feeling I had fallen downstairs, my whole pelvis and sacrum hurt as if bruised and mobility was poor. Left leg felt heavy and got heavier as the day went on. By 3pm I couldn't sit or lay down comfortably and leg was almost impossible to move. Ended up A&E and after a cocktail of drugs I could lay flat on my tummy. They noticed the lack of movement in left foot but all they could offer was if I couldnt wee or became incontinent go straight back.

GP signed me off for 11 weeks and prescribed tramadol 100mg twice a day. They took me off the co codamol and gabapentin I had been on for the previous leg pain.

Headaches began 18th sept and I initially blamed the tramadol, came off all meds for nearly 3 weeks to see if made a difference, none made. GP prescribed Sumatriptan which didnt help and Amitriptyline which helped a little.

Back pain on going throughout, leg began to ease up after 6-8 weeks and physio.

Returned to work 9th Nov, leg began to get heavy and buzzing again, by 5th Dec I woke unable to move toes or ankle. Spent 4 days in hospital who ruled out lower disc problems and it was "unknown" discharged and went private to see Neurologist.

It seems Ive had lots of little bits going on over time and each time its got a little worse or lasted a little longer. this time since december is my longest bout of fatigue and pain.

Private neuro did a brain and full spinal MRI. results is no tumour or ms. He has said its an infection which has wiped out body and will take time to recover. Hes optomistic I will recover fully. GP says I may never get better!!

Before learning to drive '13 I had eye test in 2012 and needed glasses for reading and distance was fine.

I had my eyes tested again in July '14 as 2 years were up, no change to prescription.

When I was in A&E in the sept they mentioned getting eyes tested but I cant remember why but I remember telling the optician they had told me, maybe I was getting headaches then?

That optician wrote me a letter to take to gp asking to see the ophthalmologist but that never materialised and when I saw GP last thursday (12/02/15) she found the letter that had previously been missed by the gp and promised to send that asap and chase up mri report. 2 days later they had sent a letter and I am booked in to see the eye clinic team on 24th Feb at RSCH!!

Neurologist noticed eye issues but didnt explain them he just kept repeating the tests of focusing on his fingers and moving things.

On his report letter I got he wrote "both discs pale, unsustained gaze evoked nystagmus to the right also seen on fundoscopy"

Went for another eye test on 30th Jan after seeing neuro who agreed with what he has written in letter and to discuss with GP.

Ive noticed cars jump when driving and things moving cause me to refocus a lot and can be a little hard to judge distance. I see things out the corner of both eyes jump around such a phone screen or stair gate bars. If I wave hand in front of face it seems theres several hands in slow motion causing a shadow effect. I cant read this text with just right eye its too blurry but left eye is crystal clear. Optician said im no longer allowed to drive.

I saw GP again  (19th feb) and she says i am puzzling and she needs some time to go away and really think about what to do next or treat this. So for 2 weeks ive to keep (another) diary of everything I can and cant do. my pain score and mood. Then see her again in two weeks and go from there......

My biggest concerns are no one knows what is wrong other than saying its an infection. But they never say WHERE it is or WHEN i got it. They say its since I woke up in dec but what about the weakness is September? They havent treated me with anything for an infection and Ive had LOTS of bloods tests and not one has shown infection. Including whilst in hospital.

Ive had to quit my job as a carer as I cant drive and I am now needing a wheel chair if I leave the house as I dont have the strength to walk far and my back pain is too intense. I have to sit leaning forward to ease it. I also cant raise legs properly to walk, I shuffle and swing my pelvis side to side rather then hips frwards and backwards (normal walk)

Im 34 years old and a mum of a teenager and this has changed all our lives. husband has to fill in the gaps for me when im strugglign to think and speak and he needs to remind me about meds and support me with household tasks.

GP sent me a letter saying she thinks my blood glucose is fluctuating too much and causing all my symptoms and if I get that controlled I'll be fine!!! So now is it no longer an infection and its insulin based???? I am so fed up. I kept a diet diary for 3 weeks and saw her yesterday where she decided my diet and glucose levels are not related at all to my symptoms! Hallelujah 

She has upped my pain meds and I did find a difference in the strength of the pain yesterday. Now I am just waiting for the neuro physio appointment on the 24th. I am hoping they will have more of an constructive diagnosis and be able to help. But im not getting my hopes up yet! 

My biggest fears: This is as good as i am going to recover. That it returns, it returns worse. 

Its changed my life dramatically and i am struggling to accept that, Ive always been mentally strong and thinking something may actually beat me makes me cross/frustrated/scared. Gp acknowledges my mental strength, she knows some of the things ive been through. Im often told by people they wouldnt cope with things ive done/been through but I dont know any different so I cant compare it to them. 

I also think theres nothing I can do to change whats happened or on going, I cant control others and their actions I just have to live with whats going on and either let it beat me or fight it. Maybe I have a stronger fight mode? Maybe im too logical lol. 

So far, life has thrown at me: losing two friends when i was 15, one to suicide, another in a freak farm accident where I kept my horses. 

Becoming a mum at just 17. Living a very destructive and chaotic 7 years in a relationship with my sons dad. Watching him destroy himself with drink and drugs. A suicide attempt by him pushed me into leaving. Fighting him with solicitors and moving away from my job and friends was awful. Coping with a 6 year old angry with the world. 

Embarking on an infertility journey which lasted around 7 years and was unsuccessful. My biggest failure to date. 

Losing a very very good friend to cervical cancer when she was just 26 made me appreciate life so very much.  As does my Sister in law who lost her battle with skin cancer and eventually a brain tumour after a 3 year fight. She never moaned, she just charged at each hurdle and had the **** it attitude that sparks me on into digging deep and carrying on. 

I lost both step brothers aged 18. One to suicide and the other 3 years after in a car crash. 

Ive "survived" my husband having a battle with depression and finding out he had affairs. We separated for a year and I "survived" living on my own whilst these health problem began last year. 

Each time one of these events have happened its just been a case of I cant change any of it, get on with it. Its almost like reading a book when reading those back, it doesnt feel like my life. But since I was 16 its been a rollercoaster and maybe life has caught up with me?

I think thats enough for one post! So from me and my left foot (naff title but i struggled to think of a catchy name lol!) good bye :)