Category Archives: mobility problems

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.

 


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!


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…!

 

 

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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??

 

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Finally Freedom

The chair came – and such a good thing it did too.

Today I really, really needed it – and found out how much freedom and indipencdance it really does bring,

Firstly, on 30th June 2017, Lou[ise] from Ableworld came around 12:30pm and made sure it fitted, showed how it all worked, all the little neuonces to it. Then it was all mine.

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I went to Penrhyn Castle first (it is not suitable for wheelchair access at all!). It was only because of this thing I was able to enjoy it – or get into it! – at all. Yesterday (the next day), I spent the afternoon/evening out in the local town with a friend I hadn’t spent any proper time with for years, not since I became ill. I pushed myself the entire time, and it’s a very difficult place to generally manage.

I’ve never been able to indipendantly manouvre around this place single-handedly before. I was quite amazed I had managed. First we went to Starbucks, and walked all the way to the other end of the long high street on a rather steep hill, all the way up to my favourite pizza restaurant. We had pizza and cocktails at Johnny Dough’s and really enjoyed ourselves. It was a lovely day out, much like the ones we used to enjoy back in London, and I was so relieved to have a “normal” day out for once.

However, that elation came to a crashing halt today. After passing out from a Fibro flareup in the night, about 11:30pm, I awoke around 3:30am and barely [physically] made it into bed. I ended up unable to sleep after that, eventually going out again about maybe 5am. No more than two hours later, my mother woke me up to tell me my father (my main day carer) was violently ill during that night, throwing up. She had prepared my teas and my meds, leaving them there for me next to some coffee (which I drink mainly cold in the morning) for when I did wake up. I wasn’t happy, but I allowed myself to go out again.

At 9:25am my usual meds alarm went off and I managed to take them with a bottle of water also left for me. I immediately went out again, only coming round properly at around 1:30pm. I was woozy, disorientated, confused, afraid, and my eyes were glued up by about three layers of mascara still on my face from the day before (having never taking it off due to passing out). I had no one else to turn to – I rang my sister to help me orientate myself and help me from feeling scared and confused. Bless her, she spent about half an hour with me over the phone, chatting, discussing, telling me about the renovations on her new house, and what she was up to.

By the time she had to go, I had managed to consume most of my teas and felt clearer-headed. I then had to work out what on earth I was going to be able to do with myself. I couldn’t feel my legs – there had been no one to help me with massaging (I don’t have the strength to do it myself, more’s the pity), nor used my essential oil massage oils on me (I couldn’t find the morning one, and could barely move to do so). It was then I remembered the chair downstairs. It was to be my saviour.

I managed to drag myself to get my canvas tote that I keep my things in, and put my phone and iPad in. I subsequently had no choice but to then place it around my neck and drag myself to the stairlift. I managed to get up into it and took myself downstairs. The wheelchair was left folded in front of where the stairlift comes to an end, so the transfer was easy. And once in… I was free to do whatever I wanted to do. Which was mainly to go to the bathroom, frankly.

Without this chair, I would have been screwed today – even something as simple as going to the bathroom would have been a nightmare. Food would not have been an option, that’s for sure.

I took myself to the lounge after and entertained myself in there, mainly talking to my friend over Facebook Messanger app, and nosing about online, whilst watching on demand TV. I struggled to make myself food later, around 3:30 or 4pm, and dropped some of it on the floor. I could barely manage to eat the rest I was so upset, and I made some more replacement side dish after I stopped crying. I had to stay in the kitchen to eat, which I didn’t like (it’s far too bright in there, with no blinds), but after all my struggles I got my dinner in the end, and returned to the lounge to watch (don’t laugh) Ben Affleck’s Ant-Man.

After feeling terrible about losing so much independence again, being unable to manage to do things like make food without a farracas, I had (gluten free, dairy free) ice cream. Then I got out my new seated dancing DVD and proceeded to try and cheer myself up.

The Smile and Sway DVD looks like it might be a strange and over-enthusiastic attempt at making ballroom dancing fun… but it’s far more than that. It’s 40 minutes of dancing fun, from ballroom favourites of Tango, Foxtrot, and the Cha Cha Cha, to Big Band and Jazz Hands, via the Jive to a little ballet-esque technique, this is a lovely doorway into a world I thought was no longer for me. To be back in a world of fun dance routines, Fosse-style moves, ballet arms, “Big” arms, and “Big” moves… it was a relief to be engrossed into something I had missed so much, and that was so familiar to me.

It wasn’t all so great: I missed my medication time by over an hour, but luckily there was some downstairs. I had been unable to make my teas, or even any coffee (I can’t hold nor lift the kettle), and had to rely on wine to keep my mounting paraesthesia at bay (I don’t know what it switches off, but it does the trick when necessary). I kept banging into things, and knocking paint off the skirting boards. I had to wait for my mam to come back from work to have some dinner. I ended up watching Big Bang Theory and felt a little sad again about not being able to manage things myself. Apparently I also even somehow managed to burn my hand a little… I didn’t notice until I noticed the red burn  mark on my finger just before I went to bed.

I’m glad to be upstairs, but that also comes with the fact that getting to the bathroom is going to be very difficult. I’ve so far spent hours and hours avoiding it, but I don’t think I will be able to manage putting it off much longer (it’s actually 3:30am now…), and I’m going to have to take up all my strength, courage and will and face the horrid and difficult struggle to get there and back.

My father is also still ill, so there’s a very good chance that I shall be facing the same kind of day tomorrow. This time a few more things will hopefully put in place, and I’ve already had the traumatic practice-run today.

Thank god for that wheelchair…