Hi, my name is Carol.

I am severely disabled with many illnesses and because of my disabilities I need equipment to manoeuvre me from my lounge chair to my wheelchair or wheeled shower chair depending on what we need to do.

I cannot move out of the chair without Simon's help, I cannot move anywhere without Simon's (my fiancé and full time carer) help. I live in my chair 24/7 (it is also my bed) so the ability to easily manoeuvre from one piece of kit to another would greatly improve my quality of life. (and save Simon's back/arms)

At the moment we use a mo-lift that was provided by DSS, but the only problem with that is that it is designed for someone who can weight bear. I can for about 1 minute or two before my legs give up.

Because my legs will not hold me properly - most of the entire weight of my body is being supported by the waist belt. It causes intense pain, and for the amount of time I need to "stand" on the contraption - the pain gets so bad that it winds me. Not only am I in pain for the time on the mo-lift, but the pain continues for up to 6 hours after being sat back down again.

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We had a chap come out today from Autochair, they're the company that makes the smart person transfer - the "hoist" system to get me in and out of the car safely. (the smart person transfer is stored in a bag in the house, when not in use - it comes away from the fixings in the car)

They also do a "smart base" so that the very same smart person transfer can be used indoors.

This smart base is awesome, it is collapsible and is a perfect size for our tiny downstairs, because it collapses, it takes up very little floor space when placed on its end and it would be very easily stored in our hall.

The smart person transfer (hoist) that we have for the car, attaches to the smart base and becomes a fully powered indoor hoist system. This means that there is absolutely no requirement to weight bear and that I am fully supported up my entire spine using the sling that comes with the smart person transfer - this sling sits me in a fully supported upright position to transfer me from one place to another.

Now comes the awkward bit. The smart base + delivery (+ JustGiving's 5%) comes to £1080.

We do not have this kind of money. (£1020 without JustGiving's percentage)

Therefore I hope that the general public would be able to help us.

The smart base: https://www.autochair.co.uk/products/person-transfer-into-vehicle/smart-transfer-smartbase

The car "hoist": https://www.autochair.co.uk/products/person-transfer-into-vehicle/smart-transfer-person-lift

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Why am I so poorly?

In 2005/6 I was diagnosed with Pernicious Anaemia. At the time I had my loading doses, and then was put on 3 monthly injections. All went swimmingly until 2008 when we moved to a small village on the Cannock border. The doctor there insisted on a full blood work, including B12... As I had already recently had an injection, my levels were quite high - so what did he do? Even though I am supposed to have these injections for life? He took them off me.

For 9 whole years we fought him, we kept going back and begging him to put me back on them, he always argued that I didn't need them because of my level of B12. Our last meeting with him consisted of him arguing about loaves of bread, babies on life support and HIV patients. (sigh)

Now anyone with Pernicious Anaemia or any other form of B12 deficiency because they cannot process it from food, should be on these injections for life regardless of the amount in their serum. (ref both BNF and NICE guidelines)

We finally gave up trying to convince him and moved to a new practice when I woke up with a particularly bad seizure lasting 30 minutes, then after the seizure I was completely paralysed down my right side, including my face for 6 whole hours.

Simon frantically googled looking for answers, when he found the Pernicious Anaemia Society Website, he read up on all their information, and realised that yes, my B12 injections are vital.

That was when we phoned another doctor's surgery begging them to take us on as patients, they swiftly said yes, got us in for our nurse introductions, and then booked me in to see the doc. Within minutes the doctor was urgently arranging for a course of B12 injections. My first one was the very next day. They also urgently referred me to Haematology. This should have been done when I registered with the old docs 9 years ago (the haematology referral) in fact, as soon as it was realised I had PA, they should have referred me to haematology then. (again according to the NICE guidelines)

[I was told by my old Doc that the NICE guidelines were merely guidelines and did not have to even be read, never mind listened to/adhered to. This was very disappointing indeed. What is the point of them, if doctors can brazenly ignore them?]

We saw the haematologist back in September last year, he told me that there was no point in following the NICE guidelines, to have every other day injections until symptoms no longer improve, because "I was never going to get better, the damage caused by 9 years of no injections, was already done and not reversible".

This was quite a shocking and depressing thing to hear. I wasn't expecting miracles because of how long I'd been refused the injections... but I was hoping for SOME improvement. He cheered me a little by saying that on maintenance injections, I will not get any worse.

He agreed to every 8 weeks. Which is what the NICE Guidelines suggest. (after the initial every other day injections) It is the best I could hope for, at least I had it in writing that I need these injections permanently. He also put me on Folate, permanently because blood tests confirmed that I am also deficient in folate. (Folate is actually required in the body, to process the B12 at a cellular level, without the folate, B12 may as well not be there)

We are currently trying to get the injections 4 weekly, he did promise me that if 8 weekly was not enough, he would increase it to 4 weekly.

OK, so we're up to date on THAT bit.

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Now I guess I should tell you what is wrong with me, my symptoms and how it all affects me on a daily basis.

Here goes:

My conditions (not in order of importance) are:

Pernicious Anaemia

B12 Deficiency (possibly due to the above, possibly due to my Terminal Ileal Dysfunction)

Folate Deficiency (my body cannot absorb either B12 or folate from food)

Hypermobility Syndrome

Tenosynovitis and Synovitis in my wrists (had since early teens)

Scheuermann's Disease

Ankylosing Spondylitis

Degenerative Disc Disease - Cervical and Lumbar

Osteoarthritis in most of my joints including fingers and toes.

[Currently Unconfirmed] Subacute Combined Degeneration of the Spinal Column (caused by lack of B12 injections between 2008 and Late-mid 2017)

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A non-exhaustive list of my symptoms (I often forget ones):

Without injections I was having almost daily, sometimes more than one a day. (one of them was so bad it lasted minutes and for an entire 6 hours after, I lost all feeling and control from my entire right side, (including face) the one the other night was so severe that if I still had teeth, I would have bitten the end of my tongue off. They happen more frequently in my sleep than when I am awake.) Since injections these have greatly reduced to having them regularly about a week before I am due another injection.

Spasms in ALL muscles.

Cramps in ALL muscles.

Very frequently dropping and/or throwing things due to muscle weakness and/or spasms (eg – ask the cat about the full chicken breast he got once, because I accidentally “threw” it, and in his direction)

My bladder spasms all the time, I had to have Buscopan, Vesicare and Mirabegron just to prevent it from expelling my catheter constantly. Even with these three meds, it can have episodes of severe spasms.

Numbness – sometimes entire side of body, both entire legs go dead unless they’re completely raised but even then go dead sometimes regardless, if arms are bent under a certain angle (90 deg inner elbow angle) the entire forearm and fingers go completely numb, sometimes “painfully numb”.

If I use the arms of any chair and rest my arms on the chair arms – my arms go dead after time, starting with fingers and working way up to elbows.

If I fall asleep with my arms bent, I wake up with them totally dead, cannot sleep on either side due to that entire side going numb.

Almost constant pins and needles in finger tips and toes.

SEVERE muscle weakness – I cannot walk, cannot lift my arms very well, and cannot lift anything with weight in it, not even 1kg bag of sugar / 1pint of milk / mug of tea.

Even when I try to hold something light in weight, my fingers just lose grip after a while and drop it anyway.

Cannot keep my fingers or thumbs depressed for any length of time on buttons etc, they just stop applying the pressure after an amount of broken and intermittent pressure.

Cannot tell with what pressure I am holding onto or touching something.

My fine motor control is diminishing over time. (Can no longer pick up 1cm diameter buttons with the fingers of my left hand)

Lack of sensitivity to hot and cold. (can’t tell the difference sometimes) However a hot bath that is slightly too hot exacerbates all my symptoms and makes me exhausted and very not well at all.

I cannot coordinate both sides all the time so that I can adequately use cutlery. (an example)

I cannot drink from a normal receptacle because my bottom lip “gives way”, causing the drink to spill out and dribble down me, I use “sippy cup” style beakers or sports bottle capped bottles, or straws if these are not available. Even then, I have leakages. Cannot even lift a half-full ceramic mug of tea anyway.

I have to THINK to move my arms and legs, something that normal people do without thinking, it is not at the back of my mind, I have to manually think about it. (I can’t think of the word, things that are done at the back of the mind without THINKING (possibly autonomously?) – I struggle with)

I cannot lift my legs, I can no longer walk, I have to be transfered from my lounge chair to my wheelchair or wheeled shower chair using equipment. The current mo-lift that the DSS/OT provided is not suitable due to my legs not being strong enough to weight bear, and all the pain in my spine.

Breathing – I often find myself gasping for air, especially the more tired I become. Waking up in the middle of the night gasping desperately for air – I have symptoms of sleep apnoea. (gasping for air, falling asleep even mid conversation sometimes)

Breathing often has to be actually thought about instead of allowing it to just be controlled autonomously. I often realise I have not been breathing so I gasp as if I am drowning, and then suddenly start breathing again, this happens regularly throughout the day.

My oesophagus sphincter is very weak which causes severe acid reflux – enough for me to lose the enamel on all my teeth as I didn’t realise that sleeping flat meant the acid rested in my mouth all night, eroding the enamel and then turning the teeth into chalk. They were so bad I had to have them removed. (all teeth removed because of it) I am also often choking on food because it ends up "going down the wrong way".

Palpitations – I often wake up with a literal vibrating feeling in my chest, as if my heart is spasming rapidly. Sometimes it’s that severe that it actually wakes me up if it happens whilst I sleep.

If I’m woken up prematurely my heart (?) vibrates very fast and I feel like I have overdosed on caffeine or some other drug that would cause extreme palpitations and “rushes”.

I am catheterised due to confirmed damaged or dead nerves to and from the bladder, I have a colostomy due to increasing nerve damage to the rear passage, so basically complete dual incontinence.

Severe tinnitus. (the (sometimes ‘deafeningly loud’) “ssssss” noise never abates, never goes away – it’s there 24/7, listening to music exacerbates or accentuates it)

Severe vertigo. (cannot even LOOK side to side without the dizzy attacks, cannot move my head at all without an attack being imminent, cannot watch films because of too much movement for me to focus on makes me feel nauseous. I had the test where they pull your head back and to the side whilst lying down, it felt like I was falling so fast, I had quite a panic attack indeed, then I vomited violently for 1.5 hours solid, all the way home until I finally was able to sleep. Looking up makes me exceptionally dizzy, sometimes so bad I fall over. The test to stand with eyes closed – I fall over.)

When I have a bad vertigo attack – sometimes for no apparent reason, the ONLY relief is sleep.

Cannot remotely lie with my head at an angle of less than about 60 deg to the floor, even worse if I also put it on its side. if I try – I instantly start with severe nausea and dizziness, the feeling of falling rapidly, and within mere minutes I am vomiting. This angle has increased over time so that I am sitting up more and more as time goes by.

Aphasia - mild at best, quite drastic at worst.

Severe short and long term memory loss.

Days where it seems I actually have slight, and sometimes full blown dementia.

I lose concentration VERY easily.

I can say I’m about to do something, then get VERY EASILY distracted and never end up doing it, this can happen repeatedly until Simon insists I sit and do what I was supposed to be doing. (I don’t know whether you have a dog or know dogs, but it’s a bit like the “gotta do this, gotta get this” *concentrates super hard* …. “SQUIRREL!!!!!!!!” *bolts towards the squirrel* example.)

Frequently going off in a trance-like state.

Depression sometimes. (not always, which makes me think it’s not actual depression only a “mimicked” version)

Mood swings.

Crying at the most simple things (like someone singing, a funeral in a series or a film where I’m not remotely attached to the character, things in the news that don’t remotely bother me but suddenly they grip me and I cannot stop crying, happiness, sadness, grief, I cry over things that normally would not illicit a remote emotional reaction.) I was diagnosed with “imbalanced emotions” years ago.

POSITIVE BABINSKI SIGN ON BOTH FEET. (which I’m told confirms CNS issues?)

Reflex tests often fail, they assume it’s because of the swollen joints.

Extreme fatigue.

Neuropathic pain.

Frequently choking when swallowing food.

Frequently feeling I have to swallow food past a lump, or through the tiniest hole. (I have had numerous cameras down the throat, apart from scar tissue from the reflux, there is no other abnormality)

Constant cough for YEARS that I’ve now been told is due to the reflux damaging my oesophagus.

The extreme swelling in my feet, hands and face and other areas that usually collect water, I was told – is due to not using my limbs etc? Strange that some days my face looks like a football, pretty sure I use all the muscles in my face regularly.

Not being able to process oral information in my brain. (my ears listen, and they hear what is being said, but when it gets to my brain – it may as well be a foreign language)

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I sleep and live in my riser-recliner (think old people - repose) chair and do not often move out of it except for hygiene reasons (cleaning) and when we go out, either in the garden (now Simon has made my amazing ramp) or in the car to appointments and occasional visits to our local garden centre (I thoroughly enjoy going different seasons as they decorate the centre differently depending on current season)

I am not able to move out of my chair without equipment, (a mo-lift provided by DSS/OT which is not suitable due to my lumbar pain (severe) and the fact I can no longer weight bear through my legs for more than a few seconds) and not without Simon being around.

I am able to use my computer because my monitor is on an arm that puts the monitor in front of me, and I have a board that goes across my lap with my keyboard and mouse on. On bad days I am not able to use my pc, but if I need to communicate with someone I will attempt to use my mobile.

My life is practically online as I am not able to get out and about and socialise and do "normal people" stuff. I use pc games to be able to walk, run, jump and even fly, obviously the latter is imaginary but the other 3 are "normal" to a lot of people. (this has to be controlled because fast moving images on my screen, or if my eyes move quickly, it can cause a massive vertigo attack)

I am a 42 year old Mother of two beautiful Children. My Daughter will be 19 this August, and my Son 16 in July. My Daughter lives with her boyfriend. Simon has been my carer ever since I first collapsed on 18th December 2006. (They thought it was a stroke, I couldn't walk or talk) He is my Fiance and my knight in shining armour. Euan (my son) is amazing, he always understands when we cannot do something as a family due to my disabilities. I really feel for him. I wish I could do a fundraiser or something to raise money so he can go on holiday with his mates. Or something, even a day trip. (also for my Daughter as her life was heavily affected too)

If I could do one thing different, I would go back to 2008, argue about the B12 injections and go straight to another doctor there and then, instead of trusting him when he repeatedly said I have enough in my system already. Then I wouldn't be so crippled, I'd still be poorly, but only a minute fraction of what I deal with today.

However, regardless of my conditions, I will not let them beat me, I will smile every day, and I give a lot of my time each day to help others with their problems, after all - I cannot go out running charity marathons, swimming for charity etc, so my contribution to my little world, is helping my friends get through their lives. :)

If you would like further information, or to find out more about my many illnesses, you are more than welcome to contact me at carol.venables@hotmail.com