Caught in the gap

This post is going to be somewhat bitty. Mind you, it is me who is going to be most aware of that, as my words don’t stop just because I vanish and return. I so hate suppositories, but it has come down to no other choice. After three days of feeling like an overinflated football, unable to sit, lie or even stand comfortable, despite having been to the loo on the morning of day three. In fact, for the past two weeks, I haven’t felt truly comfortable and it doesn’t seem to matter how many psyllium pancakes I eat, even doubling my dose every second day, or taking the odd laxative here and there, I have remained desperate. The last two days have been the worst and this morning, has reached the point where I can’t even take a proper breath. My internal pressure is off the scale, the closest I remember to this, was being in my ninth month of pregnancy. I so envy those people who appear to head into the a bathroom and just sit there until their entire gut is clear. I can sit there, as long as I could here, with nothing happening past clearing the final sections of my bowel. It’s odd the things that our health causes us to envy, and how the simplest things in life, become practically impossible.

Right now, I also envy those who can touch their feet with comfort. I would truly love a good pedicure. To have my feet generally pampered. For a reason I don’t quite get, not using them to get around, has meant that they are in a worse mess than they were before. I can only guess that walking has an effect on our skin that I missed. Since I have been in my wheelchair, I have noted odd things, like the skin on my feet becoming dryer and dryer. It is forming layers that desperately need to be soaked and filed. Mind you filing between my toes might be a little hard to achieve. I guess that when you are walking that, that very action within our shoes and hosiery flakes the skin away and keeps our toenails shorter, for longer. Adam has over the years, as my feet are now strangers to my hands, taken on the job of sorting them out, every few months. Which as he hated feet, is a really big deal and something I truly appreciate. Plus, I now have the pediatric who deals with my toenails, as Adam had problems with them, due to my being born with hammer toes, but it is the rest of me that could do with deep pampering, over several days.

Although I am still able to shower myself, there is a big difference between rubbing my skin with a shower puff, and my once daily process of removing bodily hair, exfoliating, then applying moistures to your entire body. Add in, that it is actually really hard to even dry myself, other than a brief dab with a towel, then waiting for the room temperature to do the rest. As a result, I no longer have even the process of rubbing my skin with a towel, to remove those dead skin cells. All those small normal daily processes are now missing, and the effect builds up. I might at a stretch be able to arrange for assistance bathing, but that part, I manage fine, it’s the rest, the things they won’t do, that I want done. Becoming disabled, brings so many things into your life that the able-bodied, wouldn’t even think of. If you asked them to sit down and make a list, of what assistance I might need, I bet you, not one, would think of any of these things, as, they’re not seen as essential. I agree, they aren’t essential, but they are the things that simply make you feel good.

Just taking care of myself as I once did, is something I actually quite miss. Not just because of the results that face masks, hair removal and so on had, but simply for the relaxation and sense of wellbeing they brought with them. The less physically able you are, the less you are inclined to put the time aside to just be a woman, and to do feminine activities. When you hardly have the energy to just sit and fiddle around online, you really don’t have the energy to exfoliate and nourish your skin. My entire feminine array of activities has been diminished to dying my hair, badly, when I can no longer stand seeing the grey on the top of my head, and cleaning and moisturising my face at night. I even gave up again on my fingernails a few weeks ago, as I had managed to break four on the spokes of my wheelchair. Lose four, and you might as well lose them all. They are starting to grow again, but they too are a mess. I have occasionally considered trying to find someone who would come to my home and do all these things for me, but it would cost money we simply don’t have. I often feel as though I am part of a forgotten world, as if I were elderly and housebound, there are numerous people who offer bargain prices for the over 65’s, even charities who will pay for them to be pampered at home. I am in an identical position, just 10 years to young, to even be considered.

I have frequently had that feeling of slipping through the gaps, of not quite ticking everyone’s boxes, if you like. People just don’t expect you to be housebound unless you are extremely elderly. When I was first given my wheelchair, I was still working and that chair meant that I could still work. I also thought that it would open the world up to me again. I quickly found that my idea was a no goer for a huge number of places, I wanted to go. In general, it was OK if I wanted to go to any of what I would call the mainstream places, but if I wanted to be somewhere just a little off beat, my path was always blocked. I, of course, hadn’t noticed when I was fit and able, that all the shops where I bought my slightly Avon gare clothes, jewelry and even makeup, were all in building totally unsuitable for a wheelchair to access. I had for a long time been used to the looks, that a woman of my age got, buying what was designed and aimed for a younger market, but to find that I was now discriminated against because of my wheels as well, hurt. It also meant that I was forced online. These days shopping online is normal, 10 years ago it made me feel as though I was doing something unexpected and secretive. It was the same the first day I turned up at my favourite city center bar, apparently, wheelchair users don’t want to listen to heavy metal while sipping a pint. I had to be aided into the building due to the steps, then embarrassed by having to ask the bar staff, for the key to the disabled loo. That feeling of falling between the gaps of people’s expectations, always seem wrong to me. Whether it was because, at the age of 34, I wanted deepest black and ultra violet purple hair extensions, or at 38 a black wedding dress, or to drink a pint in my wheelchair, my life has been spent in those gaps. Being relatively young and housebound, has simply made all of those gaps even deeper and wider.

Just yesterday, I started my quest to sort out my funeral, starting with finding someone who will carry it out as I wish, and a quote to help me with the costings. So far, I am sitting once more in a gap. They keep pointing me to their cheapest package, that includes all the things I don’t want, like a coffin, a funeral service and body viewings. In other words, they want to charge me for what won’t be used and force me into conforming, into coming out of the gaps I’ve lived in, just because I’m dying. So here I am, as I have always been in the gap, now that’s fine in someway’s, but just because I’m a gap dweller, does that mean the world has a right to ignore me, after all, I won’t see 65, so why can’t I have now, what others have then? Why can’t I have all the care, all the discounts, all the perks that pensioner receive? Being disabled, housebound and only 55, seems to mean that I’m on my own, not just with the gaps I created, but struggling at times to find my way through the gaps that the so called caring world, has created around me.

 

Please read my blog from 2 years ago today – 23/01/2014 – A question answered

A couple of days ago someone asked me what I get out of writing this journal, as he called it. I think that I have several times added small pieces through out the entire blog, pieces that explain why I started to write and……

 

 

 

 

25 thoughts on “Caught in the gap

  1. You are such an inspirational woman, I have great respect for you. You are a wonderful writer, thanks for sharing your journey. May God bless you and your husband ✨

    Liked by 1 person

  2. So sorry. I’d like to visit you in the gap and tell you some jokes — great at gallows humor.
    THANK YOU for talking about the MS ‘toilet’ thing. Nobody wants to mention it, but cripes, it can be worse by far than stuff other people think are “serious.” Like pain. Pfft pain.

    Liked by 1 person

  3. Reblogged this on Seachy Waffles On, Chronic Pain is a game changer and commented:
    An open and honest account of some of the issues faced daily, I understand the difference in true showers as I sit on my shower seat and go only wash certain areas and my wife does some for me and then helps dry and dress me. The inaccessibility issues of a wheelchair haunt me every time I go out often sitting outside shops whilst whoever I am with goes in…..I fee for you!

    Liked by 1 person

  4. even those disabled by mental health problems often fall into a similar ‘gap’. it is too hard to type/read/blog/write due to focus or inability to sit still (restlessness caused by some meds). but then, no one ever recognizes that you’re disabled, since your body works fine. i can’t go places that are overwhelming, which can mean a bar or club, or walmart. i have difficulty going places on my own in cabs or in busses, and i get questioned when i use my low fare bus card for disabled or elderly or in cabs for using a program for poor disabled folk to give them a break on cab fares, as if i am not the same person that is on the card. i have a hard time doing any kind of shopping, as just seeing all the stuff tires me, trying it on or comparing it, etc. even eating out can be a challenge. mostly, that challenge is in finding the right environment, with the least issue in transportation, to somewhere i can go and do whatever. even on my best days, i rarely can tackle 2 items in a day, as it is just too exhausting. most days out make me feel elderly, as i can barely return home and cling to my couch as my lifesaver, where i can sit and not do anything.. the disabled mental health population could also benefit from (more) hud housing as some of us actually need the monetary break (since we are on disability) so for me, the question is if there are programs for physically (young) disabled and elderly, why not for those disabled by mental illness? Shouldn’t all disabled be eligible for HUD housing?

    Liked by 2 people

      • it actually also depends on if that building is specified to a certain population. some are only for elderly, some only for physically disabled, some for both and a very very few for those disabled by mental illness. just need to get on a wait list that is either open to all or restricted to mental illness. thanks!

        Liked by 1 person

    • Even the disabled fall into that gap. I am housebound not just because of my health, but I am unable to get down the stairs from my flat. On my best days, if I lived on the level, as then, I would be given an electric chair, I might manage to go out, even for some air. I am trapped in my house. We bought a flat before I was diagnosed. Because we own our home, we don’t have children, nor abusive neighbours, they will not supply us with an appropriately adapted house. I have been indoors for 9 years, and will spend the rest of my life here, because of a tick list.

      Liked by 1 person

  5. I understand your issues as described because my mum is agoraphobic and has similar issues to you. There is very little in the UK with regards to support for mental health services it seems to be cut all the time and there is many people who do not talk about mental illness let alone have provision and support. I do not understand about HUD housing but I assume that it is similar to council and housing associations in the UK. In those you are assessed with everyone else and usually anyone with children will be housed ahead of you irrelevant of your own I’ll health needs. For a developed western world a lot of people fall through gaps and they shouldn’t! I hope you are having a good period of health at the moment Seachy x

    Liked by 3 people

  6. I’ve wished for a service like free haircuts for the disabled. (I finally gave up on dying my hair about a year ago because of the cost.) And while I can still give myself a pedicure, like I just did today, it’s awfully painful (and it takes forever). I’m about your age and it’s been for the last 5 years or so that my fingernails and toenails have turned old and hard (kinda like me). Seriously, my nails have become deadly weapons. And I don’t know how so much dead skin builds up on my feet when I’m not even using them that much…

    Since I moved to dry New Mexico, I’ve had to cover my skin in lotion after every shower. If I don’t, the dry skin is itchy and painful. But, my goodness, the effort it takes… it’s a workout. Good thing I can still afford scented lotion, an incentive that helps me get through it. Unfortunately, I haven’t found an incentive for scrubbing my toilet…

    Wish I had some kind of answer or solution… Being single, I guess I could try to find a man who might be interested in a relationship that includes pampering me and scrubbing the toilet… Ha! (I crack myself up.) 🙂

    Liked by 2 people

    • You cracking me up too. I can’t remember the last time I washed my own feet and it leaves me wracked with guilt especially as I know my wife hates feet. I can well believe it is a workout in the morning just getting up showeryuu u ed and dressed feels the same I isometimes stress that she would be better off without me and all my needs it’s a constant inner battle that haunts me

      Liked by 1 person

      • Life is full of nasty stuff, like feet and dog poop. (And wouldn’t it be gross if people did their business outside in the grass, like dogs? Please, someone tell me why dogs are allowed to make a toilet out of public spaces. Sorry, I digress…)

        We put up with the bad stuff so we can enjoy the good. I’m sure your wife knows that. I guess it’s a little easier being single — if I had to take a shower every day so I could be presentable, I would be exhausted (and in a lot more pain). Well, I guess there are plenty of benefits to being in a relationship, too… Say hello to your wife for me. 🙂

        Liked by 2 people

      • I am sure that your wife is just like my husband. From the little I know about her, she would far rather have to look after you, than be without you. I laughed when you said she hates feet, is a prerequisite for those married to the useless? LOL 🙂

        Liked by 1 person

  7. I know you’ve been through a lot, but I do have a suggestion for pampering – can you call your local nursing home(s) and see who they use? When someone is homebound, they will often make the effort, just like they do for care homes, to help you feel better by coming to you for a treatment.

    Not sure how astronomical the cost would be (I’m currently paying $55 per pedicure for a Podiatrist-blessed expert to care for my own toes at their speciality shop in California), but it might be worth it for the occasional splurge and/or regular routine if the pricing is right.

    Good luck.

    Like

  8. Your blog opened my eyes to what it is like to be home bound. I hope that writing your blog gives you joy and a sense of purpose. Sharing your insights and your life can inspire many people.Wishing you peace, Lori

    Liked by 1 person

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