Tag Archives: disabled

Physi-Oh… Lordy…No…

The isobars are on the floor again (1000mb tomorrow, and I’m feeling it…).

img_0896I’m wearing arthritic gloves just to type this. My hands are aching horribly (well, they’re crackling, buzzing and being mini-shocked, like their on that electic ball at the science museum, and “clawing”, but “aching” could be shorthand for it).

My legs are even weaker and buzzing and my back in on another planet of wrong – and my abdomen is in constant spasm.

So, in other words, it’s a normal day for crappy air-pressure day. Naturally.

However, what I had hoped for – when that damn physiotherapist finally turned up – was that I would be able to be taught how to help deal with it. To have massaging exercises, or movements, or just help to deal with these day.

You know what I did get? A frickin’ printout that I could (just about) manage 3 of from it. On a really good day. That were already incorporated into my usual practice on my (fun!) DVDs. They could have just saved her time (and damn salary) and just emailed it to me.

stupid-people-shut-upShe poked a couple of times at my leg, asked me to move whatever I could. Then promptly ignored everything I told her and gave me the most basic printout I think she could find, made for people who could move things. It was for stiff and weakened people, maybe older, maybe who have been a little bedridden. It was not suitable for what I had, which was something for perhapse lower-body paralysis or stroke or MS (which is everything that this emulates, and often all at once…). They clearly have nothing specific to Fibromyalgia or Hemiplegic Migraine. It seems they may not even have something for the others either, which is strange and confusing – and entirely unhelpful.

The worst thing is, if they had come when they were supposed to, six months ago, these may have actually been relevant… a little. But now, that ship really sailed. Off into the distance, beyond the horizon, and far, far away…

I’ve done more for myself – found actually appropriate exercise DVDs and a great YouTube yoga video – all of which are both helpful and fun, all from my chair, with some on the floor. I found better stretchy bands than they were going to give me. I have hand weights. I wanted help going further, going forward, with better things, more intensive things. But… no. Just stuff I’d already covered, if I could do it. God only knows what help people with even more debilitating conditions or paralysis get from these people, they just don’t seem to have a bloody clue.

I don’t know whether it’s severely OCD “Heath & Safety” rules that I don’t know about, or whether they’re just idiots, but they’re really not helpful. Just next time, don’t bother me and email the damn printouts instead…

About the only thing I got that was useful was that she confirmed that it was not safe for me to even attempt to walk (and oh, I am so not making that mistake again now…!) – which will be handy if the PIP thing gets awkward again (but I’m fairly sure there will be no lying this time, at least). Otherwise, I’m not sure what use they are to me…

Carry Me

 

 

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Sunrays Through The Clouds…

PIP Day.

It went pretty well, to be honest… which has shocked me no end. I felt confident going in, the day was lovely, isobars were right up at 1025mb, temperature around 23ºC, I got there early… Everything executed astoundingly well. We got a little lost, because it’s in a weird place by the Menai Bridge, to get to Anglesey, but Google Maps sorted that one out.. 😉

We actually went in right away after we got there. We were early, and it looked like the assesseor was ready to go hom early. So we were able to go on in about 20 minutes sooner, which was great.

The woman I saw was really nice; a real nurse. She was sympathetic to my situation and could see what was going on – and seemed shocked that I didn’t have everything set up already, given this has been going on so long. She was also shocked when I pointed out it had taken six months for PIP to get around to seeing me after seeing my application. All in all, she seemed on “my side”, which was of course a huge difference to the previous idiot I saw, when I first got PIP.

She talked to me, listened to me, took my 14 page “dossier” of every detail I could think of that I’ve recorded and updated as things have become worse. What I didn’t remember, couldn’t say, or couldn’t portray properly, was all in there, so they had all the information they required right there, so they didn’t have to remember everything. Hopefully, it came in useful.

I was amazed it seemed so easy. That she made is so easy – she was lovely, affable, friendly, talkative, and your typical nice nurse, really. I was very lucky to get her, really. She made it easy to talk to her, was familiar with the neurologist who diagnosed me, and seemed very well-versed on my Asperger’s. I’m not used to that!

I hope I will at least receive a fair assessment this time. She seemed to understand the situation, at least. All I want is for their official paperwork to reflect what I have to go through, and not undermine it. She said she would get the report sent out by the end of the day today. There’s a chance I could get a PIP rate that reflects my circumstances, rather than one that undermines it. If they’re as fast as she is, then I will hopefully get the upgraded PIP level sooner, too.

… Yeh, OK, probably not, but you never know…!

 


Reflex Runaway…

Coped with today by running away to Liverpool for the day.

How else does anyone cope with what happened?? I was in a tizz, all over the place, unable to cope, or even process, what just happened when that guy called to tell me the appointment had been cancelled and rescheduled… So my mother took me to Liverpool.

It’s a comfort zone for me – the closest I can get to feeling like I’m “home” without actually going all the way to London… I’m a City Mouse, and speciafically a London Mouse. I am lost without it. going to Liverpool is the closest I can get to it, and because its almost as familiar and comforting to me as London is, and has been a place of great comfort since I was a youngster, it was a sensible place to abscond to today.

img_0877This was the first time I had been out on a rather long excursion with my new chariot. She’s called Firefly, by the way… After the ship on the show of the same name. It did not start off well , but when we did finally manage to make it to the L1, it went Ok – until we had to leave, of course…

Liverpool city centre and the L1 is pretty wheelchair/ mobility friendly, and it was so easy to wheel around there in my new chair. I mainly went to Superdrug (I desperately need to dye my hair and needed hair dye…!), where I got some great lipstick shades from Maybeline, and to Lush to get my favourite healing foundation, Jackie Oates, and the most amazing shower gel, It’s Raining Men.

After a few minutes of looking at phones for my mother at Carphone Warhouse, we then head back to the L1 to meet with my sister. She’s not feeling too clever, at around five months pregnant and it’s maybe 20ºc outside… So she’s feeling the weight and size of the little Kitten inside her, bless her. We end up going to Pizza Express and eating there. I had gluten free vegan pizza (including artichokes, asparagus, red onion, and vegan cheese – it was so nice!) and a small glass of wine to help with the buzzing in my hands.

The weather was glorious, it was nice there, my sister was there, I was eating food in a restaurant that wasn’t going to half-kill me, and finally something good was happening on this day…!

Now all of that was a nice time. Then it all went weird again when we went back to the car and my mother attempted to pay. The machines wouldn’t work, and it took ages to get it sorted.  By this time it was 19:43 on my phone, and the place closed at 8:00pm.

Then when we got out we ended up going to wrong way, and eventually went back home via Speke (and John Lennon airport, where I saw no planes! 😲🙄) and Runcorn. On the journey, mam selected a way home I wasn’t comfortable with, so I got very aggitated, because of the state I was in, and I couldn’t stop being tizzy about the PIP appointment. It was now once again hanging over my head at a time it was supposed to have been over with and aggravating just about everything.

By the time I got home, I was in quite an aggitated state. After a couple of big panic attacks, and readjusting to being home, I decided to do my dance DVD to burn the anxiety of. Smile and Sway is a pretty fun DVD and it’s good for burning off steam whilst enjoying some good dancing, and interesting, fun moves. I felt better after doing this, and that was when I finally managed to get upstairs in a better mood, ready for tomorrow.

img_0879The physio is coming tomorrow (again). Apparently, they’re supposed to have some kind of “plan”… I don’t know what kind, or what I’ll be expected to do. Hopefully, I’ll also have a shower, so on Friday I can dye my hair (whilst watching the Wimbledon Men’s Finals as it’s brewing….!) – but we’ll have to see. What I do hope is there’s going to be something I can do to my legs, which just can’t move on their own, so they’re missing out on so much – it’s not like they can yoga and dance like the could do. And they miss it.

Hopefully, I’ll be up for it and be able to make the most of whatever she says I should to.

So, overall, it turned out pretty OK in the end… But it certainly wasn’t an easy one – and I’m so glad it’s over with now!


Independent Struggles

Second day of stumbling around, attempting to survive on my own under these… unpleasant circumstances. You would think it would be better. Easier.

Yeh… It’s really not.

It’s been worse. Now I’m sitting here, in my chair in the lounge, watching Andy Murray, alone and cold, unable to reach the damned radiator and turn it on (there’s a table I can’t move in the way), wrapped up in my mother’s fluffy dressing gown, I’m regretting being alive…

I’m certainly regretting being ill.

It’s been a nightmare day, and it’s not even over yet… Althouth it feels like it’s been about a week already. I’m in turmoil and frankly traumatised as to how much of the downhill slope I’ve actually gone. This morning, as always, I woke up confused, disorientated, with the only conscious thought emerging of that I was supposed to eat my meds… which were not where they were supposed to be. I was distressed and in pain, barely able to move and yet still attempting to find the medication.

Then the dog starts going bananas because the postman is at the door and the bastard just won’t leave the package and go  so the dog with shut up.

Both of my legs were dead (I could manage some twitches with my left, though… score!) and I couldn’t barely even feel them. I couldn’t get up and the dog wouldn’t listen to me. I was distraught and confused, becoming more and more panicked as I tried to make the noise stop so I might at least find my meds.

My father finally made the dog stop. I finally found my meds. I struggled to take my tea and coffee left for me. My back was burning so much I could barely breathe through it, my hands were numb, and I just about managed to get myself up onto my elbow for the few seconds it took to drink each one. Such a fun start to the day…

I lay there, so upset at the fact it was so difficult to do such simple things as get up and drink tea/coffee, anguished at the confusion and disturbed perception of where I was and even who I was… I was also in a rediculous amount of pain in my back. For company, for something for my mind, I somehow managed to get the TV on, playing live shows over TVPlayer on Amazon Fire TV Stick. It helped. After about an hour or so, I realised I had to go to the bathroom – so at that point I was forced to do something about that.

Unable to really move my legs, I dragged myself up to sitting. I pushed my stuffed baby penguin and favourite little pillow into my canvas tote, added my phone and iPad, then proceeded to put it back around my neck and carry it, dragging myself along to the stairlift, and finally into my chair. I had to take a half-glass of wine to dull some of the pain/paraesthesia in my back, and I had another downstairs – I coulnd’t put oils on; I tried (numb hands and small bottles I can barely hold anyway do not mix, especially when sliding with oils).

At least I made it to the bathroom after that, anyway. That’s definitely something very important!

I managed to place myself in the living room. Watched On Demand TV and helped dog with his paralysing fear of overhead RAF planes going around, until 12pm when the tennis started and the dog was happy again.

So here I sit. Many, many, many hours later. Hands are funny – buzzing, numb-ish, tense, a little spasmy and cramping, with some electric shock-like pain. My back, upper legs and torso are all kinds of not OK, from the beginning of real spasms, to buzzing, to cramping, prickles, and burning. My lower legs and feet don’t really feel like they exist and are freezing to the touch (despite being wrapped in a fluffy dressing gown). I am unable to get dressed on my own, and I realise I left my big cardigan upstairs (not realising I would need it). So I remain cold. Borderline frozen. Just hoping I don’t actually die of hypothermia on contract frostbite whilst I’m down here…

I managed to not throw my food on the floor again, at least. It’s a start… But this day is just so hard… It makes me feel terrible that I just really can’t manage for myself. I’m glad I don’t have to do this tomorrow (my mam is off work), I would not be able to cope. I’m not coping now. My head aches, my muscles and bones ache. The isobars are all the way up, pretty much, so clearly having help makes a huge deal as well..  Even putting things out for me doesn’t really work – it’s not exactly being “independent”, is it?

The fatigue is overwhelming. Not having the correct “care” is hurting me and having a direct impact on my welfare: You know, you just don’t realise what a big impact that makes on you until it’s no longer there anymore! The “new” version of Fibro Flareup is hitting me again… and funnily enough, I don’t really appreciate that, either… Seriously, is this day really not over yet??

 

20120617-233040.jpg


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.

 


Always Waiting…

I don’t even know how to say this… I am frustrated and just lost… I feel like I’m stuck in limbo, waiting for some kind of life to start – one that is recognisable as one – and yet after 3 ½ years I’m still stuck and getting nowhere fast.

I have a formal diagnosis, but it’s got me nowhere, except just knowing what I have. The health & social care system couldn’t give a rat’s ass about any of it. I’m stuck on waiting lists that are longer than Andrex toilet roll, and stuck in the house because I cannot go out in the wheelchair I have, despite the extra modifications made to it with cushions. I went out yesterday, and today I just can’t. Despite the nice weather. I have to be stuck indoors because my wheelchair hurt me. Today I can barely feel my legs or use them – even the small amount I can is too precious to be messed around with, so how can I justify using something that takes that away from me? It’s not OK to have to crawl – with difficulty – to the bathroom because of that. It just isn’t.

Even the wheelchair company – privately contacted – has a bloody waiting list, although it’s about a week, instead of months or years. But t he thing is even they are making me mess around and wait – and they’ll be taking actual real money off us. Well, only if they get their act together… it’s not like they’re the only ones out there. So far it will have already been a month since the first fitting to try and get the issues with the “prescription” ironed out – then I’ll have to wait another week or so for the new quote. And we might then end up having to go round again. Even when it’s finalised, it takes about 6 weeks to make it, so there goes that month and a half too. I’ll be lucky to get one by bloody Christmas.

If I wanted one organised with the NHS it would take up to maybe nearly a year to sort it out, which is ridiculous and unacceptable. Despite asking back in January or February for physio (whom, it turns out I would not only need for actual physio, but to sort out eligibility and getting a proper chair), it seems I have only just been referred now. And the waiting list is long. I was put on the waiting list for psych back in January (I presume, anyway), and it seems they have up to an 18 month waiting list. I have also been referred to “Pain Management” … although I don’t know how they can help when your problem is you can’t feel any pain [almost]. The last thing I need is an anaesthesiologist – it’s the one thing I’ve got more than enough of is lack of pain… or anything. Everything that used to kill me with agony I barely notice now. It’s come in handy, but not great when you see injuries, bruises, cuts with dried blood, and you have no idea how they got there.

I’m getting nowhere fast, housebound, frustrated and climbing the walls (only metaphorically, unfortunately). Just… waiting. Existing. Barely surviving. Doing nothing.

I want to do things. One day I’d like to be well enough to have a job again, even part time. But I can’t do that if I can’t even sit in my bloody wheelchair for two days in a row. I’m being hindered and disabled by the system, less my (strange and almost unique – unfortunately) condition[s]. My array of complicated needs and history just makes me invisible to the system it seems, and it’s degrading, demeaning, humiliating, and lonely.

All I want is to have the tools and means to do the things I love – going out with my dog, visiting historical or National Trust places, maybe going on holiday, certainly going to work as a data analyst… and I just simply cannot do that with the state things – and myself – are in now. It’s that simple. And if the government hounds wanted me off ESA and into work, then they should make it possible, not erect barriers via austerity and raging stupidity… Like keeping Jeremy [H]unt in charge of healthcare. It’s like the wolf guarding the hen house… there are going to be many, many unnecessary casualties with no favourable outcome to anyone but the wolf.

What I need is physio, someone to tell and show me how to deal with the paraesthesia and numbness caused by my Hemiplegic Migraine/Weird Fibro combo, a good active wheelchair, emotional support designed for people with ASD, and the opportunity to do what I love (the latter of which I can manage myself).

Apart from the latter, the rest is being withheld from me by extensive waiting lists, caused by a government who screams as all us disabled, disenfranchised, demeaned, ignored, and ill – or “Scroungers” as they call us – to get our arses back to work.

Presumably this is all with the help of the Magic Fairy, who will magic up all the things we need without having to go to the NHS or through Social Care… Because it’s not happening otherwise.

 

 


Dead inside….

I just got the news from Walton [hospital] that they have downgraded my GPs referral from “Urgent” to “Routine“.

What the damn hell is routine about being disabled so much you can’t even go to the bathroom on your own sometimes??

It’s a minimum of 20 weeks to be seen – that’s four months from February. So June or July if I’m lucky. That’s because of the lovely 18 week waiting rule in NHS England, and the lack of neurologists in Wales.

This is not damned well Routine. It’s life-destroying. It’s taken everything away from me, and what – do I now just give in and finally complete one of my suicide attempts and succeed this time? Because it looks like I’m never going to get anywhere with these people, and I refuse to live my life like this. This is not a life. It’s barely an existence. It’s barely anything. It’s not right.

This is ridiculous… I don’t understand why they can’t see this is unnecessary suffering? Ignored in London and now ignored here… Have I no hope of ever being taken seriously in my life?

I don’t even understand why I have to contact two hospitals (I had to call Bangor about it as well, who were bemused at the downgrade) and then ask my GP to send a “letter of Expedition“… when she’s already marked the original as “Urgent“. Coming in last because I’m Welsh or because I’m an Aspie? Hmmm??? As always, is that what they’re thinking again? “Crazy girl”? They should be treating me with more care because I’m an Aspie, not like this. There’s nothing to help me nor protect me. Nowhere I can go for help because there isn’t anywhere.

I’ve emailed something called NAS Denbighshire and Conwy Branch – and lord knows if they’ll be of any help.

This is not just a marathon, this is walking through the Fires of Hell once again. I’ve been through the 9 Circles of Hell and here comes another one. How many are there really?

I’m almost pretty much ready to give in. I don’t know how much more of this I can take. I’m sick and tired of other people fuelling this depression I have inside me, unwilling to accept that without their prejudice and unkindness, I am a perfectly OK person who just wants to get on with things. I’m not looking for attention… I’ve been bloody avoiding for decades – am terrified of medical and healthcare professionals, and unable to trust them as fas as I can see them.

I am devastated. Crushed. And dying inside…. again. But what more can possibly done? Believe me, if I had a few grand stuffed down the back of the sofa I’d suck it up and take myself off back to London, to The London Clinic, and get my answer there and then. No more 4-6 months waiting lists.

I’m just dead inside. I’m just… numb.

There’s nothing left in me now. I’m just to sit here and rot, it seems, because there is no one anywhere that can seem to help me, and that includes myself. I can’t even seem help myself.

For the first time in my life… I can’t seem to help myself.


You Don’t See Me…

I have come to realise just how much lack of exposure to the difficult and negative affects and implications that having disabilities and chronic health conditions there is.

I suffered from mental health issues from when I was a child, and the same thing was true of that then – but now I have become accustomed to seeing more and more exposure to realised of living with difficult psychological conditions. I have become accustomed to conventional and social media focusing on these things – from magazines, to newspapers, Twitter, and TV shows (drama and documentary), there’s a lot out there trying hard to de-stigmatise mental health, cover its effects on sufferers and close relations, to tackle how it’s dealt with, and with plenty of “hints and tips” on how to cope with it, whichever side you’re on.

But what of long-term or permanent physical help? There is nothing much around about how to deal with that. Mental health issues arise because it’s not dealt with, then the mental health issues – a secondary complication – has to also be dealt with too. If there was more out there about how to deal with physical restrictions or impairment, we wouldn’t need to bother the mental health teams so much, because we wouldn’t need them. We’d be getting on better on our own, without spiralling into despair caused by the emotional turmoil of dealing with a long-term, chronic disabling or restrictive condition.

I just watched an episode of the TV show NCIS: LA. One of the characters has been left with spinal cord complications and nerve damage, causing a mix of paralysis and loss of sensation. Her reaction is not one of stoicism and eternal optimism, or inspired determination to get better. She has a reaction far more realistic – she is pissed. She’s irritated, hurting, angry, resentful, and takes it out on her boyfriend. This representation – which I think is what usually happens, and happens with me still – doesn’t happen very often. In fact, this entire scenario is quite often overlooked, ignored, or avoided all together. If illness or disability is depicted, it’s never in a negative, restful, or angry light. I do not think I can recall another realistic depiction of negative emotions to such a situation offhand. Chronic illness is almost never depicted, and if it’s a disability, it’s usually depicted by an able-bodied person in a wheelchair who’s been paralysed in a generic accident (casting choices like Daryl “Chill” Mitchell of NCIS: New Orleans cast are a rare exception). There’s not many people out there depicted with

The thing is, there’s nothing really to be scared of when it comes to being faced with long-term illness or restrictive conditions. And to praise them grately, a whole host of celebrities have been very open about having lifelong chronic conditions and dealing with them, like Michael J Fox (diagnosed with Parkinson’s at just 29), Jack Osborne (diagnosed with MS at only 26).

So… where is it on TV, in magazines, in the general media? Where is the “How To” guide to other people who are diagnosed with complicated conditions or illnesses? Where is the realistic confusion, anger and resentment on TV in relation to finding yourself diagnosed with something that is going to change your life? Yes, there are diseases like cancer or HIV out there, but what about debilitating conditions like Motor Neuron Disease (like Stephen Hawkins has, diagnosed when he was just 21 years old), MS, ME, Fibromyalgia, brain injury, cerebral palsy, cystic fibrosis, spina biffida, stroke… there are endless lists of ones. All ones that real people deal with every single day. Yet, few media outlets dare frighten the general public who are “normal” with such things. Heaven forbid. Therefore, there is very little out there to give us some indication that we are not, in fact, all alone when it comes to dealing with these things, nor any advice and guidance on how to manage dealing with it at all.

I’m not even quite sure why it’s so terrible or taboo. In this day an age we can talk about and depict the most illicit debauchery, of the raunchiest of sex lives… but not about how long-term, chronic and restrictive conditions affect us? Why? How terrible is it? I have to live with it, as do countless others… but the the other “normal” people don’t. It’s real, it’s true, and out there too many people have to deal with it in real life. Why is it not possible for it to be depicted so that not only others can be exposed to the realism of it, but we can see ourselves someone else going through it and empathise with them. We should all care about each other – isn’t that what humanity is supposed to be about?

Stephen Hawking has MND/ALS and is a living miracle of his survival of this condition – yet what we care about is that his brain is bigger than the entire universe (hence clearly why he’s the only one who understands it!) and he’s funny. And apparently drives Jaguars ( ;-P ). Michael J Fox is known as being Marty McFly with a hoverboard, not for being someone with Parkinson’s. And so on. We are all people with accomplishments and lives, who just also happen to have a chronic or restrictive condition. But that condition is always going to be hard to deal with, and it would be nice to be represented, to be seenacknowledged.

In my opinion, I believe this is why it is easy for so many to see us as “lazy”. That we can just “push through” it, like it’s just the bloody flue and cup of Lemsip and a banana is all we need to do the trick and get us up an running again. Nowhere out there does it show how hard it is to live with a disability or chronic illness. We just see the luckiest of us who can manage their conditions, or have an earlier stage of it. Nowhere does it show us taking cocktails of pills, or crying with pain and frustration. It doesn’t show people isolated by lack of mobility, or struggling to get in and out cars or bathrooms. It doesn’t show people being rejected by medical professionals, by employers or other people.

We are invisible.

It’s 2017… No one should be invisible.

 

To Be The Unseen…

I dearly wish there was something out there I could read or watch that showed how to deal with not knowing what the hell is wrong with you, whilst medical practitioners ignore you. I’d like to know how to deal with insanely intense agony every second of my life. I would love one of those little “Tip” boxes that appear in magazine articles about how you cope with not being able to move, and being trapped by your own body. I’d like to know how you manage when everything you loved has been taken away from you.

I’d like to see someone reflect my own agonies, inside and out. In that NCIS: LA episode, I saw a little of – because she reacted in just the same way I do. When I realised that, it occurred to be that I had no seen in previously – not in the last 3 years and 3 months I have endured this have I seen true representatives in the mainstream media. Nowhere can others see what it is really like to live like this, when you’re struggling and a victim of your own body and circumstance. Nowhere can anyone find information to obtain some empathy and insight regarding what people with disabling or restrictive conditions go through.

Effectively, this is also how the government of this country still manages to make us the “bad guys”, scamming the system – because no one understands what it’s really like.

So far I have, over the years, seen a great change in depictions of certain things in the mainstream media that I have suffered with, including focusing on cancer (which family members had), depression and mental health issues, and even Autism. No longer are these three things taboo or frightening words to the world. These are not the things I am ashamed of – and I’m quite proud of my AS and the abilities it affords me.

But this… This – whatever it really is in the end, and frankly I would prefer Fibromyalgia above all else possible – is what I am ashamed of. And I don’t know why I should be. I should not feel bad, or guilty, or apologetic, or ashamed. Yet I do.

Perhaps it’s because it doesn’t really have a name yet – when you haven’t tested for anything, you cannot call it Fibromyalgia. It’s only probably that because everything else has been ruled out and is impossible. Nothing has been ruled in or out for me yet, so I don’t know. And what’s worse is that I don’t know if it’s something else, either. A couple of pokes and the same blood test repeated 3 or 4 times is not diagnostics. It’s just a waste of resources.

The bottom line is, I just want to be me. That could be me with everything I used to have, or me being restricted and not really able to walk properly and in pain. But I’d like to know what being me is, and a part of me is this… thing. So I would just like to know what this thing is, so I know every part of what I am. It makes things easier – the harshest truth is better than the softest lie because it’s the truth. And that’s all I want here.

To go with it, I’d also like to see that we are no longer invisible. That we are not shameful or taboo. We’re just here, we are a fact, and we just want to be a part of society – not ostracised (both in our day-to-day life and in media/fiction). You don’t need to feel guilty we’re here. We shouldn’t have to feel guilty we’re as we are. So why is this going on?

You’ll probably happily talk to me about relationships, work or sex, but not about this condition or illness? Why? It really probably should be the other way around… I know what I’d rather talk about with someone…! I would rather educate someone about my illness than have them scared about it or too “embarrassed” to ask. Surely it cannot be more embarrassing than talking about sex or problems at work? It’s not even an embarrassing thing – and I shouldn’t have to feel like it is, either.

I am not so terrible for having some condition. I am not so changed because I have it. But what can change is perception. It’s isolating and lonely. Openly talking about things, not being afraid, not being embarrassed or guilty or ashamed, not openly avoiding it, not allowing it to be the “elephant in the room”, or just avoiding me altogether.. that’s what makes things wrong. It would be so much easier just to have understanding, patience, support, and openness about it, then just leaving it be and getting on with everything else as much as possible.

Share and support. Humanity and empathy. Acceptance and care.

It’s should be easy… Right?


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