Tag Archives: neuropathy

Silent Suffering, All Alone…

Does the grief ever really go away? The one you feel from all that you’ve lost?

The shame, the humiliation, the degradation, the demeaning secret truth of the life you have to… exist with… it just never seems to become “OK”.

To lose so many of the general functions you were used to your body doing for you, that you took for granted… does that ever really become something that’s really “OK”? You lose so much… I’ve lost so much… It’s not OK. Not even close.

It’s hard to know that the people around you just do not understand what you have to deal with… whilst at the same time so relived about that too. But then… they do and say things without understanding the impact on you, or the extent you have to push yourself to meet their expectations, or their level. What I mean is that they just think “popping out” is just something you can just do. Just like that. Or walking just anywhere they want is just fine, etc. When you live with a chronic illness, when you’re living in a wheelchair, when you sometimes can barely breathe because it hurts so much or your just too exhausted to manage it, it’s not that simple. Not even close. Getting out of bed is nothing to them, but to you, that’s every spoon you have and then some. Then they expect you to do even more.

I run on zero spoons. I do as much as I can on it, from going out for the day, to trying to do something normal like reading or reading, to attempting to make some food (which also requires at least one other person, too), but when they’re then a little tired from it they want “a little lie down”… as if they’ve done so much more than you have, expecting you then to do things for them… that really grates on me, and they do it because, quite frankly, you’re so damn used to it and they’re not. You live with the mind-killing exhaustion of chronic fatigue, so you therefore must be more used to it and are OK… Right? I’m not sure what this logic is, but it’s rather mean – and frankly, either ignorant or naive.

It’s not nice when just getting out of bed was utterly exhausting, then spending your day in your wheels, and your (frankly) grown-up Huggies, having no say over when you go or how, and just about able to stop yourself crying from pain or exhaustion or paraesthesia symptoms, or all the above.

It’s horrid when everybody leaves you behind for their “normal” lives, and look on with distain when you turn up in their lives… You’re supposed to deal with it, but Heaven forbid they do for a day or a few hours. What’s worse, is they make their jusgments without knowing the true extent or details… and they really don’t want to, either. What’s worse than the reality of seeing you is acknowledging the true reality of what you have to deal with. And they don’t want to know that… you know, in case it upsets them. Poor, poor them.

It’s hard so see everyone else in your life get on with being “OK” and you struggle to simply go to the bathroom. As your very basic functions, ones that you don’t even remember living without before, fail terribly and leave you stranded back in those days once again… How can you even look them in the eye with your head held high? Siting in grown-up Huggies pull-ups, or giant-tabbed Pampers, knowing they might not even do the job properly, how in hell are you supposed to have any self-esteem left?

I can barely feel anything from the chest, the lower rib cage, down (including not being able to feel the diaphragm), and thus I’ve been left with less and less control over things – first the legs, then a little bit of the pelvic floor, to having no concept of most of my abdomen, or lower abdomen, and my pelvic floor is barely even a memory anymore. Today, a really bad thing happened in this area and it was extraordinarily humiliating, and overwhelmingly shocking – to be faced with the reality of how far my body has slipped from my own grasp has left me reeling and unable to comprehend where I am (figuratively) in my own self, my life, my entire existence.

I’m hurting inside, but again, there’s no one there who really understands what’s going on… and once again I am alone. How do you even explain? It’s horrifying to you, so what does it evoke in other people? If you’re ashamed, what will they think? You can only imagine they would be horrified. Like you are.

I do not know how to deal with feelings. I don’t like feelings. They’re messy, unquantifiable, horrible, uncomfortable, and usually I can’t even cry (which I don’t like anyway because it makes your face soggy). Right now, I have a lot, and I don’t know what to do with them, how to process them, how to manage to get the hell rid of them, to be honest. I think there’s guilt, maybe shame… There’s definitely sad. Loss. Grief. Reeling and shock. But they all get so very overwhelming, and then I get very confused and upset.

In the last few days, maybe a week or so now (I lose track of the days), my hands have started playing up, and started not working properly. The paraesthesia in them is astounding and so painful. I can’t move them they’re so numb (imagine someone tied your wrists so tight it cut off the blood flow and you have them tied up like that all day). They can spasm so badly they curl up on themselves so tightly, they leave deep nail marks in your palms. They can never open out properly, they’re in a permentant “claw”. It prevents me from being able to do even the simplest thing, and also can prevent me from playing games, or even following a conversation because the sensation (or pain) is so bad there is no more room in my brain for anything else. It makes writing [typing] so hard sometimes that if I manage at all, every word has a spelling mistake at best and is gibberish at worst. It’s emotionally painful to endure, to be honest.

I feel like I’ve been left to rot by the system. Everyone has been less than useless. I’ve just been left to my own devices, and I’m floundering in trying to help myself. The diagnosticians throw me to general services (pain clinic, psych, physio, etc) and discharge me to make their targets look good. Those other services have nothing to  offer except inefficiency and long waiting lists you stay on just to see how inefficinent they are. It’s certainly not to be helped by them.

I’m lost, broken and alone, still trying to find something of myself in all this, wondering if I can ever rise to get the better of it, so I am what is driving me, not this.

 


Aching & Breaking

The weather is getting to me again… My hands are tingling with pins and needles, mixed with tiny but very powerful and painful electric shocks. My fingertips are especially painful, as is a small space at the bottom of my right thumb joint.

Of course, that’s not all it is, but right now it’s marginally the most painful and uncomfortable to endure. Otherwise there’s various neuropathic issues, from ice-cold feet to deep electic-lightening and achy-like deep buzzing around various places like my neck and hips and shoulders. Even my eyelashes and hair feel like they’ve been plugged in to an unrestricted electrical current.

img_0896The thing is that I’m trying to watch the damn tennis, and it’s making it really difficult! I have my 42-inch screen split between 2 matches via my PC – one with Murray, the other with Nadal. And I’m playing with my iPad (or I was, before trying to write this, anyway…). Trying to do all that whilst, well… everything… hurts, is hard. So I’m annoyed…! It’s Wimbledon, for crying out loud!

This is supposed to be the summer… I’m wondering if someone forgot to email the weather here in North Wales… The temperature has gone down, the isobars are back on the floor again (about 1011mb straight down from being in the 1020s), and once again I get to be controlled by the weather – but I’m trying really hard not to be!

To make matters worse, this morning I had to get a mountain of paperwork together for a new PIP (re)assessment – I told them I was worse, so five months later they finally want to check that’s actually true… I have two plastic wallets filled to the brim (if they had brims, which they don’t) with letters, paperwork, and a personal statment that’s 14 pages long detailing everything – so they can’t say I didn’t tell them.  And I’m still wondering if I’ve got everything I need, and whether they want all the old stuff as well.

I think I’ve just put literally everything and then some in there, so hopefully everything they want is in there. But at least that’s out of my hair now. It’s on Wednesday (it’s Monday today), at 3:40pm – and I checked, the isobars are up so I’m not going to be completely dead by the time I get there.

There’s a fair chance I’ll manage at least some full sentences whilst I’m speaking with the annoying fruitloop that will be undoubtedly in charge of my fate with these people. But that will be after quite a long journey to get there… because they just love to send you places you haven’t got a hope in hell of getting to, just so they can get you out of their hair on a rubbish technicality…

Oh, and to follow this joyous occasion that will probably leave me wanting to chew my own head off, I then have to see the physio on Thursday, the next day.

Then on Saturday I long jaunt to see my lovely sister in Southport… I’ll enjoy it whilst I’m there but I’ll probably not appreciate the long journey! I hope that will at least end my week on a nicer note!

Oh the fun that awaits me this week…!

 

 

IMG_3025


Loss of Legs… (Temp)

It’s reportedly the best weather of the year, running between avarages of over 25º in the north, to well over 30º in London and the south. It’s gorgeous outside here.

But I’m stuck indoors, curtains closed, because I’m, well, rather broken.

My pregnant sister is out with my father and my own dog, walking in the gorgeous forest around here. Unfortunately, I can’t even make it to the bathroom without a lot of help from my mother… which is great when you’re well over the age of 30… and I struggled a lot even with my three-wheeled helper up here.

Waiting for this chair is becomming borderline traumatic. It’s beautiful warm weather. I can’t go anywhere, do anything, see anyone. I can’t go to the doctor, take my dog for his vet checkup, go out in the sun, can’t see friends, get my own groceries or go shopping, can’t go to the cinema to see a movie I’ve been waiting almost a year to see…

Best of all, it means I can’t go anywhere even within the house now, either. Temporarily, at least (I hope).

Because of circumstances, I’ve ended up with (at my best guess, anyway) neuropathic inflammation in my lower back, leading my legs to become completely useless. Simply put, it’s like they’re paralysed because the information to and from my brain is not getting through, so it can’t understand I’m trying to get them to move.

I liken it to perhaps trying to yell to someone who’s far away – and being too far away to hear you. Or maybe think of a cell phone connection, where it’s one bar but it goes off and on, more off than on, and then it cuts out, so the other person can no longer hear you anymore.

The strange thing is, some of it is on way-way traffic – I can feel some “sensation” (though it feels weird) on contact, but no pain and what I feel is… “distorted“. It’s so odd I don’t even know how to describe it. Unfortunately, the upshot is that I can’t get any information down to my legs. So dead they be for now. Offline. Yey.

In all hope, the inflammation will eventually die down and they’ll come back online again. Hopefully without damage or long-term issues. But for the now, until that happens, I honestly don’t know what I’m going to do.

I have no idea how to manage things without the ability to walk. So far today I have struggled immensely, going to the bathroom has been a nightmare, and after trying to go downstairs for a while, I almost diddn’t make it back upstairs because I could not manage to get up off the floor and find a way to the stairlift. Those who have to do this permenantly are insanely brave and clever, but they do have wheelchairs that don’t try to kill them with pain.

I have to admit I’m a little scared… Certainly concerned about this evening and tomorrow. Even if it comes back, I’ll now fear this could happen again. It would be my worst nightmare… but then with a tiny taster of it, I also realise it really wouldn’t be the end of the world, not with the right tools to deal with it. It changes everything, but it doesn’t utterly destroy it. Other things achieve that far more than just not being able to use your legs. But I never ever want it, and I am desperate to make sure this flareup doesn’t remain.

My mum, who’s becoming quite proficient in making essential oil recipes to use for massage oil to help with all my various symptoms, is working on trying to get a strong anti-inflammatory concoction to help fix it, and get things running again. I hope it works, even if its just a little. Right now, it would be closing on impossible to manage tomorrow, here on my own – or at the very least just with my dad. It took two of them to help me today to get around.

 

Essential Oils Recipe (Anti-Inflammatory)

Tumeric
Ginger
Lavender
Roman Chamomile
Marjoram
Rosemary
Clary Sage

…and Juniper

We’ll see whether it works… I’ll hope that something happens.

 


What Am I…?


It feels like it has been a long time since I knew what it meant to be “me”.

What am I now? Not much, it seems.

Curiosity is lost. I have no desire to read or learn – because I just can no retain any information anymore. I feel exhausted just picking up my Kindle, magazines, or iPad for anything other than fooling around with it. I shouldn’t – and quite frankly, I’m not even sure why.

I am immobile and housebound. Under a required house-arrest because the off-the-rack wheelchair makes me so ill it’s insanity itself to even attempt to sit in it anymore.

My strange neuropathic paraesthesia / (numbed?) Fibromyalgia /  Hemiplegic Migraine thing going on, that no one can actually explain, keeps me prisoner in its claws – I can’t walk, sometimes barely crawl, my fingers don’t work very often, and I can feel so terrible (paraesthesia, spasms, feeling like I’ve been filled with cement, brain-fogged, unable to eat or move) that I simply can do nothing but stare at the TV. Not really watch it, just stare at it.

I am badly overweight and struggling to even move, let alone try to be any kind of active. I do try – a lot. But the windows of opportunities are so sporadic, they don’t really count. So I don’t get to do the things I love(d)much anymore – Pilates, Yoga, dancing. I do them as much as I can when I can, and it’s literally quite the relief to be able to do at least something, no matter what it is. Another part of my past that I can touch occasionally, and feel something that brings great comfort and familiarity. There aren’t many of those left now.

I have so little control over limbs and key muscles. There’s no diaphragm, no pelvic floor, very little use of my right leg at the best of times, and on occasion my right arm too. I can barely feel my tummy except in one space in the very centre. I can’t sing, have to use Gown-up Huggies (or lady-pants, as Tena likes to call them), and I am a slave to the weather and air pressure (check your isobars if you feel really rubbish – I just stop working once it dips below 1020mb, and I fall apart and can black out in 1015mb or less).

Dignity is gone. I quite often have to crawl, or worse, be reduced to attempting to “commando crawl” because my arms and legs dont work properly. I need help to clean myself, shower, brush my hair, change, go to the bathroom on bad days. And the Grown-Up Huggies don’t help, either.

I lost the ability to drive. I can no longer cook. I have a robot I was so excited to make sitting around in parts. I have courses I wanted to learn that have sat around gathering dust, after only managing a small handful of them before falling too ill to carry on. I can no longer go horse riding. The list of books and magazines that keep going unread hurt me deeply. I feel like I live in loss and missed opportunity, and it’s quite frankly heartbreaking.

My memory has gone, particularly STM (Short-Term Memory). The long term memory went a long time ago, and has never really returned. There are people, places, things, occurrences that I have no idea about. Today I forgot how a General Election worked when you went to vote. I’ve been voting since I was 18… I hate to count how many polling stations I’ve been to in the subsequent near two decades hence. I should have known it, but I did not. People tell me things and have conversations with me, and I have no idea ten seconds later that it even occurred, let alone what was said. I’ve given up being disturbed by that – it happens too often now… it’s another unfortunate “new norm”.

The small things can really get you. I feel really put out I can’t now go to the cinema, because I can’t use my chair – I’ve spent ages looking forward to seeing the new Wonder Woman movie for months, and now I can no longer go. I feel awful I cannot cook my own food. I can’t even make my own tea, and the hot water dispenser is actually in my room (because once upon I time I actually could).

My ability to play games is sporadic, and I don’t enjoy it half as much as I should, could or would without this rediculous situation that I find myself in. The same goes with conversing with my friends, almost entirely losing my ability to actually speak to anyone – because it’s contra-indicating my ASD something rotten. I can’t fixate on anything but fear anxiety now – so there is no room for my usual crazy obsession about Mass Effect and Dragon Age. This might break my heart more than anything else.

I keep asking myself “What can I do?”… But there doesn’t seem much on an answer. I can sit… sort of. That causes problems in and of itself. I can stare at the TV… which I hate. Sometimes I can hold a conversation. On rarer occasions it might even be intelligent. I sit here thinking… and I struggle to think of anything more. That does not make me feel very good at all…

 

 

I’m waiting – constantly waiting – for it to “get better”. It doesn’t get better. It never get better.

For some reason, so far it’s only become worse. I really wish it would stop doing that.

Right now, it’s just existing in limbo, waiting to see if a new, proper, chair might allow me to have some semblance of an existence, in being that I get some respite from my incarceration here, get some perspective in going some places where I can take myself along. There’s always hope, and I really do hope to god this time I get some respite from all this by being able to “walk” myself about, to go for a “walk”, to make it to places that I can’t go now. Certainly couldn’t go in that other chair.

I’m trying to do good in waiting for it. Trying to get stronger arms and core. It’s not going too well, because despite it being June, no one told the weather, and the isobars and temperatures are through the floor – and we’re being bombarded by gales, rain, and storms. Fun. So far, for the last two weeks, the isobars haven’t risen above maybe 1010 or 1015mb. Next Tuesday (it’s very early Friday morning right now) it threatens to get to at least 1021mb. Hopefully, this time, it’s telling the truth. The last time, it most certainly was not!

If this weather doesn’t improve neither will I. I will still do as much as I can, but it won’t be the same, because the extent it makes me feel utterly terrible to the point of passing out can render it impossible to do anything. It seems so rediculous to be enslaved by something so rediculous, but there it is.

I hope I shall get some sleep sometime tonight – it’s 4:06am and I feel too wired to be able to sleep. I don’t even know why – if I did, that at least would be a start! I guess as an Aspie, that kind of thing is probably always going to elude me, but I do try my best to work it out. I could be anxious – it’s general election night. Or it could come from the fact that mornings can be harrowing after disturbing dreams/nightmares and being awoken badly in the morning – frankly the last two days have been extremely traumatising (no, I’m not kidding nor over-playing it… more like the opposite), and I do not have it in me to even begin to deal with a third day of such things.

Of course, I might not be anxious. It might be from a lack of being able to expel energy, thus never feeling tired. It’s hard to expel energy when you can’t move. It might be from the “pain” – and by that I mean feeling the intense sensations of Paraesthesia, which may as well be pain. It hurts, I suppose, but in a very different way to before, or what I’ve ever been used to before. So I just call it “pain” because it’s a shorthand that other people can easily understand, more metaphorical than literal.

I think the problem is I honestly don’t know if it’s all of them, any of them, or none of them. I wish I did, so I could do something about it. As it stands, I have no idea how to help myself, which is really annoying.

 

 


Fun Times…

Just loving the hemiplegic migraine flare-ups going on right now… and especially loving the extra-excessive spasms and blackouts. Oh, yes… very fun… There’s nothing like coming round without a clue, and you’re somehow lying on the floor with someone trying to wake you up, and you don’t know how you got there, and you’ve just lost several hours to nothing.

Just a second ago, it seems you were just doing something vaguely normal, then suddently it’s many hours later and someone is truling to get you to come round, more akin to after surgery and you’re in Recovery than at home reading something or watching the TV.

Heaven knows where they’re suddently coming from and nothing is keeping them in check. The spasms are ridiculous and never seem to stop, squeezing, contorting, twisting, causing pain and writhing until (hopefully) they eventually get done with the torture.

Maybe it’s the weather…. Halfway up a mountain in soggy Snowdonia is just about one of the worst places to live with chronic illness. It’s April and yet apparently it’s officially colder than it was at Christmas. That whole “Global Warming” thing is definitely misplaced PR – over here it’s definitely “Global Freezing, Soggy, and Rainy”. There’s no “Global” in this “Warming”… The only warming seems to be in the Arctic, where the ice is melting, turning into cold rain, then being dragged over here and dumped right onto us. Yey.

This is also what happens when you’re allergic to meds and can’t take any… and there’s nothing you can do about it. It seems when the weather gets bad, this gets to stupid, and there’s nothing that can be done about it. Yey, again.

The neurologist at least sent a post-haste note in their letter to expedite access to Pain Management, to at least try and help, although lord knows what they can do without giving meds. On the bright side, at least the MRI was clean. And I checked… there was a brain. So there.

Being stuck in the house isn’t helping either, probably. But it’s just one of those circle things where you can’t win: Damned if you do and Damned if you don’t. Extra Yey.

Oh, and did I mention Yey…?