Tag Archives: neuropathic

Anniversary of Hell…

Today is the anniversary of when I first was taken into hospital

On the 28th January 2018, I was booked into a Premier Inn, to go to my niece’s christening the next day.

Instead, I was carried into hospital, barely semi-conscious and screaming so loudly apparently they had to put me into a former office/storage closet, until they had a bed to feed me tramadol and morphine … I woke up in a hospital’s SAU (Surgical Assessment Unit) instead of a hotel… and my parents lost over £200 for the booking… 😢🥺😖

My brain is trying to process it, rather unsuccessfully, to be honest.

However… I like the fact the anniversary of my leaving coincides with one of my new physio appts. I think that’s telling. I could not even wheel myself through the hospital back then.

To celebrate it with something that would have been so alien to me back then, doing what I thought was impossible — like being able to sit up a little on my own, or hold myself up on parallel bars for nearly a whole minute so my body is “standing” upright (as in, I have managed to become strong enough now to hold all my bodyweight enough, so I could raise myself upright on them)— is almost confounding … 🤯

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Alternative Thinking…

“Alternative” medicine is all I have left to use now – anything synthetically grown in a pharmaceutical lab generally does not agree with me (with severe side effects)

The latest attempt at some relief from this neuropathological crazy is CBD, or Hemp oil (aka “legal” type of cannabioid). It tastes of pure evil, but it’s early days so far. I’d like to think there’s a different, but it’s too early to really tell.

The essential oils recipe I have now is pretty fantastc – and including basil, Wintergreen, white camphor, juniper, and frankincense are all very important, key ingredients to making it work… the Wintergreen and Frankincense especially so. All put in pure Coconut Oil (but sweet almond and jojoba oils are also really good too) to be massaged in at least twice a day.

Another really helpful thing has been Magnesium Oil [spray], which helps dissipate the spassms and relaxes the muscles around the neck, shoulders, and shoulderblades to help prevent them – or at least the worst of them. Little ones get through.

This is obviously a very expensive treatment plan. They’re all very expensive products, and when added together is a rediculous amount of money… it makes you realise how it must feel to try and scrape together your healthcare treatments in the US and how lucky we are to have access tot he NHS.

Unfortunately, the NHS doens’t do natural products, and so I must use a hell of a lot of my pittance from PIP to pay for all this. If the government thinks what pittance pocketmoney they give is actually enough to pay for any of what ill/disabled people require to pay out for things they need, they’re completely delusional in the most rediculous way. Presumably they also believe in unicorns and see leprechauns, too… And they’ve clearly never been shopping for necessities to help with such situations and circumstances.

I’m relieved that there is at least something out there that helps. If I just relied on pharmaceutical meds, I’d be screwed. I can barely function on the Pregabalin, so there’s definitely no chance of going downhill from there on medication that’s supposed to help, but instead makes me sicker. Thankfully, Mother Nature got there first, and this Wiccan is used to looking elsewhere for answers rather than “modern” medicine.

 

 


Alone Without Precedent

The more I am in this situation, the more it eludes and confounds me. It doesn’t help that it thus far has no definitive name. What really doesn’t help is the psychological aspect.

I checked around the Internet… There seems to be really little on ASD/ Autism/ Asperger Syndrome with neurological or physical chronic illnesses. There seems to be no precedent, nothing out there from other people  who are or have been in a similar situation. There’s one or the other – but not both together.

I feel I am wondering out in the wilderness with no way of knowing which way to go, or where I am even going. There is so little help… Nothing but Waiting Lists, and then some. Lots and lots of them – Neurology, Occupational Therapy, Psychological Services… and then there’s more to come for diagnostics, physiotherapy, treatment, more appointments… A never-ending carousel of waiting. With no one to help in the meantime. Without a clue as to what might be wrong with you or why you’re suddenly like… this.

All I know is that it’s no longer Fibromyalgia. Last time I checked that required pain. Mine is all gone, replaced by horrible other things instead. No longer hyper-sensitive to cold, no longer in that pain I was in, no longer able to feel… well, almost anything. I’ve never hit my “funny bone” before and barely noticed. The dog can walk or bounce on me, chew [gently] on my arm and play with it. I don’t notice bumping into things, or people accidentally knocking into me, or things falling on me, or even touching my own arm or leg. I’ve been told there’s a terrible rash on my back and neck as a response to using oils – and I would be none the wiser if they hadn’t told me. I can’t feel it and it doesn’t even bother me. But when I touch it, it feels pretty rotten, I must admit…

img_0886Today my fingers went really numb… like someone had tied super-tight string at the bottom of each one; that feeling of the blood flow being cut off – and yet there was nothing on my hands at all. Not even gloves. I have also had a very hard time with extreme Fatigue (and I do presume I have a cold, to be honest), argued with gathering a Shard on Dragon Age: Inquisition, and my back and legs (especially my legs) have been quite “buzzing” and/or tingling (varying through the day). This morning I couldn’t even move or feel my own self to even try.

Right now I have to manage on the – rather genius and amazing – essential oil recipes for neuropathy and then for fatigue/brain focus, Devil’s Claw, Magnesium Oil (amazing), Neurozan vitamins, and coffee. Occasionally there’s minimal Co-Codramol (8mg/500mg) – almost always when I have a cold or infection – and Boots Botanics Ylang Ylang & Manderin “Aromatic Rollerball”. That’s on top of maxed-out Pregabalin pills. But without a definitive diagnosis, we’re all just pissing in the wind, guessing and hoping for the best.

I feel alone. Lonely. Because it really does seem I’m all by myself with this. Yes, peopleimg_9891 have neuropathic chronic illnesses, and yes, people have ASD. I am yet to find someone else out there who has experienced this and at least attempted to navigate this.

With the NHS in turmoil, and Social Care drastically underfunded, I’ve pretty much relegated myself to the Raggydoll pile. I just now wish to be the best I can be, especially psychologically. It’s a big ask, but it’s all I can focus on – and the only thing I can control now. There is just nothing left in my life I have any control over, and I have no idea. I am in the middle of it and I don’t understand any of this – so it’s hardly like you can expect anyone else to… But I do wish that at least I did. And this new numbness twist? That just hurts my head.

I am just lost, and I do not like that at all.


The Pain Masquerade

I forgot to take my pills on time tonight… again. But this time they were really late. The agony was excruciating, and frankly made what I usually go through on a daily basis look like child’s play.

It was a waiting game to get any relief from taking the Pregabalin (4 hours late), and attempts to divert attention with watching something (which works when extra pain rears its head whilst on Pregabalin) cam to nothing as the pain simply continued to escalate.

The worst are always the electric-shock type ones that turn up out of nowhere and sear so sharply through my bones and/or joints that I either scream or can’t even make a noise at all it’s so bad.

I couldn’t breathe. That was the worst part. Not only does the pain not allow me to catch my breath, but it doesn’t allow ke to breathe  the pain within my lungs and ribs are astronomical, leaving me struggling to expand my lungs at all without extreme pain. Add the rest of the excitation to it, and it was a nightmare mix  I couldn’t even cry properly… The pain was enough to bring a stream of tears, but I couldn’t cry. It’s always just too painful. It was hitting a high-9, or maybe a low-10… And soon, it would be way beyond that.

Victim or VictorThe only relief there was to be had was being given 2 (big) shots – gulps – of cognac that was in the cupboard. After a few minutes to get it into my system, it dulled the pain enough to breathe. It took some of the worst of it off, although it really didn’t take quite enough of it off to get me back to my normal level of pain (about 6/7 on the 10-scale on an avarage day… Without Pregabalin it’s about a 15… and maybe then some).

It took about 2 hours for the Pregabalin to sink in. Even afree about 3 hours+, the pain hasn’t gone down below a low-8 since – thanks to way over-extending myself in a foolhardy attempt to do housework chores. The incident has once again driven home just how important Pregabalin is, since without it my life absolutely wouldn’t be worth living anymore – nothing is worth enduring that much pain.

It’s also made me quite acutely aware of just how much it hides. Clearly the Pregablin conceals the pain. It does not treat, and it’s not even a painkiller. It’s a neuropathic medicine, used to – effectively – treat, or trick, the brain directly. But not cure. Whatever is causing the pain is still there… Even the pain itself it still there… It’s just that the pills stop my brain registering it so acutely.

Even with the Pregabalin, excess dynamic behaviour can hit me at a 10+ … I’ve tried to walk to much (when I could), or (now) I’ve pottered about the house too much, or even sat in my chair for too long. Or it’s simply just cold. These times, a “10” is a blessing as the pain shoots right of the scale and rockets into the stratosphere.

Each time these incidents happen, your “10” seems to become that much higher… After all. When these things happen, the “worst pain you’ve ever had” – the very definition of a “10” – becomes higher than it was before. The next “10” had to be even more than that. After a while, and after your pain scale carries one getting higher, your threshold gets higher, and sometimes you wonder how bad it really is, given your pain endurance has become enough to make you immune to some pain, and maybe you’re hurting yourself more than you realise with some things, because you’re used to having so much more pain than avarage.

Look for StarsBut then when you live with long term chronic pain, or Fibromyalgia, it seems that everything just causes such an extreme amount of pain it’s unreal. However, it also still seems that the same thing happens – your pain tolorence appears to be rising when it comes to your interpretation of the pain scale.

No matter what is causing the chronic pain, you know the pills are just masking the problem… and that no one knows how to really stop it. Cure it. Unlike with pain killers, I can still feel the pain somewhat with the Pregabalin. It’s just… dulled. A lot. Like after having lots of alcohol – your brain kinda registers it, but it’s kind of far away at the same time. Sometimes it seeps through more the others. Sometimes it can’t mask it very well at all… Like the pain in my joints. It’s rubbish at helping me deal with them, so I need Devil’s Claw (as well as a vitamins/cod liver oil combo) to help to that. It does make my quality of life better though, and incidents like this continue to remind me of that.

Right now, even with the Pregabalin, I’m in pain. The alcohol finally wore off… and I’m hitting a good 7-8-ish on the pain scale. I still expect it though, because of the effort I put into trying to make the house look like a house, instead of something resembling the aftermath of Katrina. On the other hand, I’m not sure how much the incident before had an effect on me in relation to this.

I guess all I really know is that it’s 2:15am and I hurt a lot. And I’m strangely hungry. Maybe the munchies from the cogniac. Alcohol has always made me hungry..

I get the feeling the worst of it’s over now, at least. I hope I do not make the same mistake again… It’s always a nightmarish wakeup call to be reminded in such a vicious way just how much these little capsules you have to take change your life, because without them you really would just give up on life and simply die from unbearable agony.

At this point I don’t care whether they just mask the pain… Just as long as they actually do.


Broken NHS; Broken Me

From one nightmare to another: In the night I am tortured by my mind. In the morning I face the nightmare of being alive.

It’s been exactly one year now since I had to leave my job, got my referrals to the pain clinic and mental health community Access Team, and entered this surreal life of waiting.

I spend all day, every day, simply surviving, struggling to get from A to B. “A” being getting up, and “B” being the evening. I feel like a puppy left in the house all all day all alone. Other people get to go to work, to do something useful, to be productive or helpful or… something. I can do nothing but sit and somehow pass time or entertain myself until everyone comes home again.

If I was a puppy, then I would chew everything in here. Instead, I play games, watch the TV, scribble random ramblings, or mess around with my computers. Anything to while away that time. To get from Point A to Point B… because time is just there and you have to experience it somehow, because it’s not going away. Time is there whether we like it or not, and when you are unable to do anything with it, it is not only wasted, but torturous to endure. Particularly when you are used to the freedom of being able to choose what to do with it.

Struggling to do the basics whilst I’m here on my own is also not so much fun. You take for granted so many things, but never realise it until you can’t do them anymore. What I really miss right now is being able to make my own lunch… a nice lunch, not god-awful wafer-thin ham or turkey in some bread that takes about 20-30 minutes to prepare, with picnic cocktail sausages or mini sausage rolls on the side, because they’re already cooked and ergo easy to make – even I can take a couple out of the package and put them on a plate. I even miss eating packaged sandwiches from shops, having their “meal deals” with Starbucks or Pret coffee at my desk whilst I’m working.

All this has been taken away from me because the NHS can no longer get their act together, thanks to all the cuts and re-modelling structures they’ve been put through. Both the physical and mental healthcare ends have let me down completely, and as a result I am left in permanent limbo. I’m used to being let down by the NHS – despite knocking on their doors since I was a child, they have constantly and consistently let me down. Somehow, though, this really is the stinger in the tail.

 

Breaking Point

Thanks those cuts, the broken NHS, and their incapability to now help those in need, I have spent nearly a year and a half just waiting. Waiting for help. Waiting for a diagnosis. Waiting for… anything.

It is certainly clear to me now that if the government wants people to move from ESA welfare support into work, it’s the NHS they need to look at first. Because it’s taken nearly a year just to get a single followup appointment to see my hospital consultant, it has put me out of work already for nearly a year and a half before even getting to see someone or getting a diagnosis.

When I started this journey, it was pneumonia. Now, there’s nothing “just” about pneumonia – it’s a painful illness that makes you feel like you’re suffocating in painful agony – but in comparison to this, it’s much less complicated. At least it has a name.

Now it’s just “severe widespread pain”. Not exactly catchy, nor a particularly affective diagnosis.

First, it just became some widespread pain. Over time, the pain became worse. Very much worse. Four months after it started, it was bad enough that I could barely move and I certainly couldn’t work, so finally, my GP referred me to the Pain Clinic.

Three months after that, I finally received my first consultation… but by this time it was now already seven months since it first started. I thought that this was finally my way out of the woods. I wish I had known then that it was actually only the beginning.

They were late. I was rushed in and out. He barely looked at me. I was prescribed Pregabalin (Lyrica) for the pain. Neuropathic pain, they called it. But that was the total of the information offered. No diagnosis, no prognosis, and that was the extent of the treatment given. Some meds. An MRI was ordered for diagnostics. That was scheduled for a month later. The next appointment, though? Not for nine.

It was the beginning of more waiting. More time lost to sitting alone, unable to do anything. More time to while away, between the pain starting and some kind of answer. I don’t hold my breath for any “cure”. But something to help – even if it’s just a name to work with, so at least when people ask my why I’m in a wheelchair I can actually give them an answer.

Until then, I just wait.

 

Headless Chickens

No more has been done to help with the state of my mental health than with the physical. My mental health has never, not ever, in my life been anywhere close to “good”. But I don’t think I have ever been quite this bad before.

I do know have the “EQ” (like IQ but with Emotion instead of Intelligence) of a toddler at the best of times (apparently a side effect of the Aspergers…).

Medication has left me completely completely unaware, not attached to realism or what we measure it by – time, place, date, connections. The rest of it has been taken by the pain. I am disconnected and feel like I exist in a surreal dream where there is no time .

I don’t remember when I slept properly last. I’m beyond exhausted, which doesn’t help my mental health – they’re not kidding when they say that sleep deprivation leads to delusions and temporary insanity, and I can vouch for the fact it’s a valid form of torture.

I asked for mental health support at the same time as my referral to the pain clinic. I was referred to the mental health community Access Team. Whatever money they receive is wasted… they have no idea what they’re doing at all. I was shifted, shunted, given excuses and, finally, blatantly ignored.

After a hissy fit about six months later, they finally referred me onto their new ASD unit – which despite several requests regarding assistance to receive a diagnosis, I was never told of before, let alone referred to. It took me fighting for six months to be heard… just another kick in the teeth from this ridiculous organisation.

The ASD unit itself it not a part of the NEL NHS. Hence, I received a consultation quickly and given a followup appointment and effective diagnosis quickly after. They recommended CBT treatment, and therefore I finally received an appointment for an assessment with a psychologist ten months after I first requested one – and only because the out-of-area ASD specialist unit recommended it. Not because of the original referral to the Access Team, who have effectively ignored me the entire time I’ve.

Here’s the kicker though – now I’ve finally been assessed and put on the waiting list, it turns out that waiting list has an average of twelve months. Twelve. A year. After the year I have already waited. I have spent the past year struggling desperately. Breakdowns, meltdowns, arguments, panic attacks, terror, depression… I’ve been through them all without the support or help I asked for a year ago. I’m still waiting for it.

My GP and ESA advisor suggested going to anther arm of the mental health service. I called them, but they simply stated that because I was on the Psych Services caseload they could take me. It was one or the other. I had to be “discharged” from Psych Services before I could be seen by them… despite the fact I have not even been seen once and on a very long waiting list. I was under the impression that this second service was an interim, a counselling service that would help me cope until I could see a CBT specialist. Not so the case. It’s a choice – either a long waiting list to see a specialist, or accepting basic counselling now. It’s a cruel choice to ask someone to make, and I am genuinely shocked that with such long waiting lists that there isn’t an interim to help people whilst they wait.

 

Broken NHS

North East London NHS Foundation Trust seems to be in shambles. There is clearly not only a lack of funding for the amount of people who must require treatment for such long waiting lists, but whatever funding there is clearly isn’t being used properly.

I can neither get a prompt appointment to see the pain clinic, nor can I get any therapy to help me deal with the situation whilst I wait for a solution to materialise for my pain. Not only that, but their lame excuse for a community mental health team is in shambles, offers no services, and is a joke. For all their posturing about what they offer… well, they can’t seem to actually deliver it.

After one year of waiting, and with nothing to show for it, I’m frustrated, disappointed, and hugely infuriated by the lack of help I have received from them… Even with the calamity of the services in North Wales, I had help quicker than that. It was pointless and substandard help, but it was an attempt at help at least.

I get the feeling that the only way I’ll get half-decent treatment is to move. Far away. Anywhere that’s outside of the NEL catchment area. The Post Code Lottery… Even within the great city of London you play the Post Code Lottery now thanks to the whole NHS England Foundation Trust remodelling and 18 Week Waiting list palaver.

I suppose that’s what you get when you run the NHS like it’s a bank.

 


Sentence of Loneliness

Diagnosis is just a word. It doesn’t really change anything when it comes to certain conditions… there’s just nothing can be done about it really. Nothing helpful to you, anyway. You still have to live with the condition. There’s no magic cure for a lot of mental health/”neuro-pychological conditions. The different names are just for paperwork. For the psychologists, for the doctors, for the psychiatrists. If you ever see any one of them…

Weather The StormMy “problems” have had many names. None of them have really seen, accepted or explained the entire picture… the entire “problem” – or range of them. They were just names. With those names came “help”. That “help” did not really help. At best it made it worse. Medication has only made me ill. Being even more ill made it all the worse. Sporadic “therapy” has mainly been a waste of time, mostly lazy or deplorable – if not an absolute insult. I’ve been written off as a lost cause (at the age of 15 by a child psychiatrist… forever after known as The Dickhead ever since, for obvious reasons). I still don’t know what I am. Because there’s still a strong part of me that believes that’s important (thanks to the doctors/psychologists/psychiatrists/society), that part of me believes that is who I am. Twenty years after this madness began, I’m finally realising that’s not actually the case.

There is a flip-side to understanding certain psycho/neuro problems. It allows you some access into understanding and controlling the condition. This comes from understanding that the mind/brain and body work in tandem – eat better, try to go out, do things that make you happy… blah, blah, blah… But this isn’t just it. It’s understanding and engaging coping mechanisms that actually work – even getting other people to work with you to support you. However, it does not make it go away. You still have to live with it. Hopefully, you can mange to live with it a little better, though.

Lost...… But… It’s lonely. It’s a lonely existence, even with all these things in place. Psycho/neuro mental health issues make us different from everyone else who doesn’t have them. We struggle in silence amongst them. We can’t even just wear a little pin or wristband so we can know each other and offer just a tiny smile of appreciation and support as we walk on by. Talk to each other. If it’s really bad, you’re not even out there… You can’t make it out the house, for whatever reason. Even in the safety of that cocoon, though, it’s still lonely. Any and all the conditions means you live in your own head, and you – only you – can head what’s going on in there. If your condition is not Depression, it soon ends up joining the fun because of the situation you find yourself in… Hopeless, helpless, confused, and anxious. The things Depression loves to feed on.

It’s always fed on mine. Understanding what may be “wrong” with me has made me feel less hopeless and helpless about it – but… nothing has changed much. Receiving no help or support from the outside, despite numerous requests and contact attempts. For over 20 years. I basically got labelled as a Depressive and an anxiety-driven hypochondriac and was left at that… Ignored. Medicated. Lost. They had their little “diagnosis”, their label. No more was required, and nothing more could be done. They looked no more and no further, despite everything getting worse and worse.

It’s seems every mental health system I ever encounter is a radically appalling, inefficient, confused, chaotic abundance of incompetence. It’s been nearly 8 months now since the last referral and I still have nothing. Just chasing their incompetent shadows… No department “owns” me, they don’t know what to do with me, and they keep trying to not give me what I requested… Simple CBT. That’s it – that’s all I actually asked my GP for. Yet somehow I’ve become lost in their “system” (as in computer system… Their basic access database clearly holds almost no effective information whatsoever). Nobody seems to know anything. And I don’t ever get anywhere. So I’m still waiting.

On the other side – with the real physical stuff, it’s even worse. I’m “owned” by the Pain Clinic, at least. But between the first appointment and followup was 9 months. Sent me for MRI right away… Now have until next March to wait until I know if there was anything on it. But I’m not holding my breath. The last one said “nothing” too… as in “nothing significant enough for us to care”.

…So… I’m just stuck where I am.

Unable to move much or look after myself particularly well. The meds are starting to have a little effect, but it’s nowhere enough to give me my life back… barely just enough to manage to potter around the house a little without having to use my stick or dog all the time. It’s also just enough to get side effects – ones that exacerbate the condition, which doesn’t exactly help. Maybe when my system is overloaded with it, I will finally feel some real difference. I can hope… If I ever find out what that is.

Assistance DogI’m lonely… I have my dog, but he’s good and mainly sleeps. I’m home alone most days and struggle to manage to feed myself if there’s no “easy” food, or even take the dog out… well, he takes me out, but it’s the same thing. As long as it’s not raining. Then it’s out of the question…

I manage to do some things, and I entertain myself by playing games, challenging myself with those. It’s not quite the same as working… I miss my job a lot. As an IT contractor in data cleansing and analysis, it was fun and I was challenged constantly during every day (in most of my assignments). I had something to focus on, and it made my life better. My mind better.

The games are a half-decent replication – challenging, problem-solving, perseverance, concentration… But it also feels a bit like cheating. I should be working, earning my own money… but I can’t, which makes me feel sad, uncomfortable, and borderline-depressed. And no one is exactly falling over themselves to help me do it. The smallest things are now so difficult, now the pain, mental health illnesses and meds cause drowsiness, exhaustion, confusion, agony (or at least just some aching if the meds are having a good day), so even the smallest thing is hard. I keep thinking back to the days where I was at least capable of getting up and going to work, coming back and cooking dinner most days, even if it did cause a lot of stress.

But left home alone, I’m simply lost and lonely.

Sometimes, the games and walks around the neighbourhood just isn’t any substitute for my old life.

Sometimes I struggle to remember that my old life is just that – old. Been and gone.

Sometimes I struggle to remember that I still need to be happy with what I can do. And that regardless of what I have or don’t have, my old life can never come back, because even if I could do the same thing again, it would now be my new or current life.

This is now my current life.

It’s a lonely one… But at least it’s still mine.

 


One Small Step…

Well, I never believed it was possible that there was medication out there that would actually work for me. After trawling through what seems like the entire BNF for something that will work, it’s pretty unbelievable that it seems like I finally may have found something that actually does.

change your attitudeI was given Pregabalin for neuropathic pain. I admit I was skeptical – nothing has ever worked and I am hypersensitive to opiates, so I have never been offered anything that gave me any pain relief without making me extremely ill from side-effects. I never thought this new one might actually do anything. Instead, it’s actually working. Slowly – but it’s still working.

After a while of it building up in my system, raising the levels every few weeks, and with only fairly mild side effects, it seemed like one day it just suddenly started to work. I managed to a few things on my own without too much difficulty. They were little things the average person would take for granted, but to me they were huge. It wasn’t like it completely magically cured me – far from it. But the mind-blowing sharp pain that constantly kept me plaguing me and leaving me in tears, unable to even move and quite literally sometimes almost unable to breathe, was eased. Not gone, but significantly eased.

After getting my hot water dispenser and clever choice of easy food, I celebrated when I was able to get up on my own (slowly, but not too slowly this time!), walk to the kitchen without my stick (slowly, but surely!), sit on my bar stool chair, and make my own coffee and sandwiches and bring them in. All without Doggy’s help! Doggy lay on his pillow in the kitchen and offered moral support in exchange for some ham. Then he offered more moral support when I ate my sandwich by helping me eat it. He’s very generous like that…

Let GoRight now, I can actually feel the pills as they get into my system and start working, which is nice (and may be entirely my imagination too…). In the morning before I take them I’m still in almost the same pain as I was before, but there is some minuscule difference now even then – it’s not quite as sharp and mind-blowing as before, which is hopefully showing a step in the right direction. Once I take them, within about two hours there starts to be a difference in how and what I can move. My fingers become less agonising and start moving better. They’re not stiff with sharp pain and aching raging through them. As the pills build up, I can – to a certain extent – type, use a mouse, an Xbox controller. I can’t really move for another hour or two, but then I can get up (very carefully!) without Doggy’s help, make some hot sweet tea or coffee, even make a basic sandwich, without too much difficulty. I still need Doggy’s moral support though, because it is still difficult, even if it’s not mind-numbingly agonising. There’s something very unfortunate about being so happy to finally being able to do such little things, or even make it to the bathroom on your own without any help, but it’s so amazingly freeing when that option is given back to you. It’s awful you couldn’t do it in the first place, but it’s really great when you can do it again, even if it’s not all the time.

The pain is still there… but it’s numbed a little. It’s masking it, making it feel extremely uncomfortable, rather than having that sharp, searing pain. Like having a local anaesthetic for something rather invasive… it feels a bit like that. It probably also helps that Pregabalin is a well-known GAD treatment. I think its GAD side works well on me too, which probably helps an awful lot too. It’s extremely stressful, distressing, and anxiety-inducing to be incapacitated by excruciating pain for so long. It’s incredible when even a small amount of your mobility and ability is returned to you by just dulling the pain just a little. So you can breathe. Think. Have a small break.

The pain relief the pills give me don’t last too long, and it’s obviously not perfect. It’s not the full dose, so I still hope that I may get another little step forward when I finally have them raised to the full dose.

I can’t run about, ride horses, do yoga, walk unaided and go out without Doggy (or a wheelchair – yet…?). And perhaps I never will. But if I can do some basic things like look after myself in the house without being afraid of being left alone, that’s a huge deal, and I’ll accept that. Independence is the most important thing when you have it taken away. Recovering even some of it is a huge goal and feels great if or when you get that some of it back. You’ll take anything, and be grateful for it. It would be great to be able to walk a little outside on my own, with my stick and have doggy walk with me, rather than having to pull me. But we manage OK the way we are, and it’s good for Doggy to have a job.

I How to Flystill can’t play games for long hours anymore, type a lot, or make some food without a lot of pain – but that pain is still numbed in comparison to what it was before. And at least I can do those things a little, and the pain I have is pretty bearable in the most part, as long as I take it easy. Right now I take what I can and celebrate every little thing I can do. I’ve had to learn to think differently, stop being so hard on myself, deal with things as they are without question and try to be OK with it. It’s not easy, but I start by celebrating what little things I can do, and try to troubleshoot the things that I can’t. Try to work my way around them. It’s difficult, and learning to accept is a hard lesson to be learned. I have to accept my body for what it is, and what it isn’t, and I shouldn’t expect anything else. We don’t live in a world, a society, that thinks like that though… So it’s hard to do so. But I think I’m getting there – quite slowly, but I am.

Some days are lighter than others. Some days are downright dark. But the little things matter and so I try to remember that.

These things may be one small step for man, but they’re a giant leap for a Lel – so I’ll keep going.

 


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