Category: Blog Page 1 of 9

Reminding myself to be grateful

On 16th January 2026

I feel like my life is so mundane at the moment that I don’t really know what to post about. Other than the blog posts in my drafts that I’m slowly working my way through editing. And yet I know I am so incredibly lucky because there are so many people who would dream to have the mundane life I’m talking about.

I slowly potter around my flat each day, I shower roughly 3 times a week, I go out for a short walk in the village or to the nearby square of shops 2 or 3 times a week in my wheelchair, independently. There’s medical admin, life admin, battles for adaptations all being dealt with. Continuing physiotherapy exercises. Contemplating whether or not a doctor’s appointment is required for a not quite new/not quite normal symptom. There’s short periods of doing hobbies. There’s looking after Dolly dog. Numerous cups of tea made and if I’m really lucky drunk while still hot. And it’s all interspersed with regular rest breaks alongside a regular sleep schedule.

But there’s nothing really to post about. Nothing to really photograph. Unless you count the numerous cups of tea or Dolly dog. I don’t often get photos when out for a walk because my hands are occupied controlling my wheelchair and when necessary Dolly’s lead as well.

I don’t even feel like I have much to say at the moment. I just seem to be bumbling along in life not quite sure what I should be doing, or if what I am doing is for the best. There’s loads of ideas floating round my head to put my stamp on my flat and add a bit of warmth while getting rid of the dreadful red carpet that’s everywhere. But no means to do it yet, it’s going to be a gradual process for so many reasons; health, skilled help, finances etc. so there’s not much I can do on that front.

I still have this dream/idea to start selling some of the things I make – cards, wreaths etc. but at the same time have very little idea where to start with it. And whether I could cope. I also dream of getting involved in my local village community but again it’s a case of not knowing where to start and how I’d manage or if I’d manage.

So many dreams, so little energy and ability to make them a reality. Feels like the story of my life, yet I also look back 20 years or even just 5 years and know I wouldn’t believe where I am today and what I’m managing. So perhaps I need to find a way to start chipping away at one of those dreams, while also remaining grateful for all I am managing that a few years ago I could only dream of.

For someone who said she didn’t feel like she had a lot to say I seem to have written a lot! Apparently there’s more on my mind than I realised and what started as a social media post has now become a blog post. Now I better go make one of those lovely cuppas I talked about and have a rest.

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Essential Living Aids: The Bathroom Edition

By Clare

On 14th January 2026

In Blog, Essential Living Aids

A number of years ago I wrote about my essential living aids, and as over the years the number of aids I rely on has increased and changed I thought I’d share a new and updated version. Some of what I did back in 2014 has evolved, with new things taking their place, while others have stayed the same. I have reached the point in my life with chronic illness where I have so many aids to daily living, there is too many to fit in one blog post! So here we have the Bathroom Edition of my essential living aids.

The Shower Seat and Anti-Slip Mat

A white shower seat sits in a shower cubicle with a purple mat underneath

I honestly don’t know where I’d be without my shower seat now; probably unable to shower! It’s needed to save energy, since sitting takes less energy then standing, and also because my legs often give up on me after a short while standing and falling in the shower is not on my ‘to-do’ list! It also helps prevent me from getting dizzy – which is more likely to happen when standing – and subsequently fainting, again something I don’t fancy happening in the shower! My shower seat is one of those which is freestanding but also folds; this means when I stay somewhere away from home I can take it with me if the place I’m staying doesn’t already have a shower seat – if there’s no shower seat that means no showers for me while I’m away!

The mat is a fairly basic living aid – your bog standard anti-slip bath mat or in this case, shower mat! It helps me keep my footing when I get in and out of the shower cubicle and when I move from sitting on the shower seat to standing to get out etc.

The Grab Handles in the Shower

For years I struggled with getting in and out the shower, holding onto the door frame or shower riser rail for support. But now we have suction grab handles in there; one on the wall to help with getting into the cubicle and on/off the shower seat and one on the shower cubicle door making it easier for me to open the door as there is only a small door knob on the inside to use to open it otherwise; something I can’t always grip! They make a huge difference to my ability to get into the shower, however the suction cups do sometimes come loose and we have learned it is often best to check them before each shower “just in case”!

The Doorbell in the Shower

A doorbell in a waterproof smartphone bag, hanging from the doorhandle of a shower cubicle This is a rather odd addition to my collection of aids, but as I am needing more help it has become essential to be able to get my parents attention when I am in (or ready to get out of) the shower. And so we came up with the mad idea of putting a doorbell in the shower cubicle which I could press to get help when I needed it, without having to shout to get my parents attention.

In order for it to hang on the door handle I bought a waterproof smartphone holder; designed for using smartphones in wet conditions. The lanyard enables it to hang, while the bag protects it from the damp air. I hang it from the riser rail inside the shower and from the door handle outside when I’m not in the shower, as having it on the outside is also handy for those times I end up on the bathroom floor and need some help as I can reach it from there now too. We’ve had to set it to a tone that is VERY different from our front doorbell though as my parents were getting confused about which bell was ringing sometimes – this one now plays Jingle Bells when I push for assistance!

The Backscrubber

This is another recent addition to my collcection of aids; I’ve been struggling with washing my back since the muscles around my shoulders have strengthened through physiotherapy and are now holding the joints in place better (I never realised I was pulling them out a bit before!) So now I’ve bought myself a back scrubber to make that task a little easier again, it’s early days but so far it seems to be helping.

The Toothbrush Grip and “Easy Flosser”

Another somewhat new thing; in my previous post about my essential aids to living I was using foam curlers on my toothbrush handle, but a little while ago I found a plastic grip specifically designed for toothbrushes and decided to give it a try. Now I can’t say it’s perfect – you have to be VERY selective about what toothbrush you buy as only certain shaped ones will fit in this grip – but it certainly works and unlike the foam curlers it can cope with getting wet, and doesn’t need replacing like they used to!

I also use a Wisdom “easy-flosser” which is basically a floss harp on a long handle, meaning I don’t have to try and grip the tiny floss strings – I have poor grip and weakness in my hands which mean that is incredibly difficult, at times impossible, for me. The easy-flosser takes some getting used to but has made my life a whole lot easier.

The Low-Height Mirror

As I now I have to do things while sitting down rather than standing we have installed a mirror at a lower height so I can see what I’m doing when I’m sat at the sink doing my face or teeth. It’s such a simple thing but once again it makes a big difference to how easy/difficult a task is – have you ever tried flossing your teeth without being able to see what you’re doing? It’s not an easy task, especially with dexterity issues as well.

The Notice on the Bathroom Door

Now this one I blogged about on it’s own when it first came into existence back in 2015. The notice on the bathroom door is there simply to stop me from locking it when I am most at risk of falling. It reads: “CLARE DO NOT LOCK WHEN SHOWERING OR DRESSING!!”. It came about after many episodes where I had said I wouldn’t lock the door because of how unsteady I was on my feet, only to then automatically lock the door and cause a panic when my parents thought they heard me calling for help! The notice has to be fairly specific so that during times of particularly poor cognitive function I know I can lock the bathroom door when I am “just” using the bathroom, but also so other people know the notice doesn’t apply to them and they can actually lock the door since there is only the one bathroom in the house. The best thing about this notice is that it actually works! There have been many times over the years where I have automatically locked the door, only to then spot the notice and realise I need to leave it unlocked for my safety.

Now if you’re a regular reader of this blog or follower on social media you’ll know that a lot has changed since I first started writing this post – I moved out into a little accessible flat where for a time I was coping with a shower over the bath and low toilet setup, which included a bath board to sit on, suction grab rails, suction shower head holder & a Mowbray toilet frame. I was having to remove the toilet frame in order for there to be space for someone to help me into the bath to be able to shower.

I was then very lucky to have a level access shower with shower seat, grab rails and a comfort height toilet. So for the first time in over a decade I was actually able to shower myself independently on good days. I have since been forced to move again, to another accessible flat in which the bathroom needs adaptations; the shower area although level access, is too small to use a shower seat in safely, the toilet is low and there’s no where to put any grab rails near it, in part because it’s so close to the door (in fact I can’t have the door closed when I use the toilet because should I fall no one would be able to get in to help me!). So currently I have a walking frame next to it acting as a grab rail! I’m waiting to hear what adaptations can be done and when. However I felt that leaving this post as it was with all the things I’ve used over the years might be helpful for others who aren’t so fortunate. I hope to do a post about the bathroom adaptations and any different aids I now use soon – depending on how long it takes to get my current bathroom adapted!

I honestly don’t know where I’d have been without these aids over the years, they have made life that bit easier and enabled me to keep a little of my independence while also keeping me safe.

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Difficult Decisions

By Clare

On 7th January 2026

In Blog

No one can deny that life comes with difficult decisions to be made, and life with chronic illness can often make those decisions even harder. Mainly because there is so much more to consider. So it is with a lot of trepidation that I have decided to write this post. I actually wrote this just over 5 years ago but was too hesitant to actually publish it, and now it feels wrong to edit the minor details about the big ‘3’ ‘0’ approaching because it was how I felt back then and to be quite honest, still resonates with me now as not a lot has changed since I wrote this back in 2020.

You see this post is about something I’ve barely talked to anyone about. There’s not exactly been reason to. But in the interest of sharing an honest account of what it’s like to live with chronic illness, and in turn disability, I feel it needs to be written.

I can’t remember a time when I haven’t imagined being a mother. It’s something I’ve always wanted. And throughout the early years of illness it’s something I never gave up dreaming about; I was still a child, I would recover from this illness and live a normal life, there was plenty of time.

But in recent years, as the next big landmark birthday creeps ever closer (yes, I’m talking about turning 30 already!) and I’ve helped my parents out with babysitting family friends little one’s, I’ve made some undeniable realisations and it’s forced me to be honest with myself.

Just helping out with babysitting; not being on my own in the same room with a baby or toddler, but just being on hand to give cuddles or play for a little while during a two hour stint of babysitting completely exhausts me. After fifteen minutes of holding a baby, even with pillows supporting me, my arms become heavy and painful, and they are next to useless in the hours and even days that follow.

Trying to keep a toddler entertained is just as exhausting. I can sit on the floor helping them build towers until they knock them down and we start all over again for a short time but then it becomes difficult. Pain levels increase and fatigue often overwhelms me.

Just helping babysit for a couple of hours, and I must stress the fact I am ONLY helping, not doing it on my own, leaves me needing days of rest. And so despite the fact that realistically right now it isn’t something I need to really be considering because I am single and unattached, which makes the whole ‘having a baby’ thing rather unlikely anyway, I have decided that it is highly unlikely children will be in my future.

And it breaks my heart. Even though my decision isn’t exactly a final one; for all I know if I meet someone I might change my mind, if what some of my doctors say actually happens and I recover to some degree where a more ‘normal’ level of life is possible again I might change my mind. But for now my heart is broken, yet another one of my dreams for the future is in tatters because of my health.

I’m not judging anyone who has similar illness to me and has decided to have children, for anyone the decision to have children is often a big one, in some cases a difficult one too. It is also a very personal choice. So it’s important to note that this is just my view, my personal choice right now, and that’s not to say things won’t change in the future.

But for me I can’t imagine having a child with my health the way it is. Lets just forget everything the body goes through during pregnancy and labour, because quite honestly that’s only a small part of the equation. My decision is solely upon my ability to care for a child. If I can only manage to hold a friend’s baby for fifteen minutes before my arms become next to useless for a couple of days, how would I cope with having my own baby? The guilt I’d feel at not being able to hold them, of having to rely on others to care for them would only serve to make me feel worse about myself.

The fact I wouldn’t be able to be the Mum I want to be; hands on and involved. That my health would dictate so much of what I would be able to do for a child, that I would be even more reliant on others for help than I am now. That my child would grow up with a mother who some days might not be able to cope with them being in the same room as them unless they were really quiet. I can’t imagine how that would make me feel, and quite honestly I don’t want to imagine.

I know this decision hurts, and as I say, it is a very personal one for anyone. But I think having a child and not being able to do everything I want to do for them, everything they need me to do for them, would hurt even more.

In other posts I have touched upon how difficult it is seeing friends and family of a similar age to me getting married and having kids etc. but I haven’t truly expressed how hard I find it sometimes. Don’t get be wrong I am happy for them, incredibly so, but while other family members are going gaga over the announcement of them expecting a baby, or over the baby itself, I am torn.

Part of me wants to be like them; all happy, going gaga over the new little person in the world, absorbing all the joy that comes with having a new baby in the “family” (whether that be actual family, or the family of friends we all have). But another part of me just wants to run and hide away, it hurts so much to see people the same age as me doing exactly what I had dreamed of ever since I was a child, and knowing that for me, at least right now, there is no way that could happen for me. Then there’s the wiser part of me who knows I should learn to deal with the pain, set it aside and make the most of the time I can manage with the little one; that although they’re not my baby I can still get some joy from being with them, even if I can only manage tiny stints at a time. And I am getting there with that, although it still hurts, I am managing to find the joy in having a few cuddles or a little bit of playtime with the little ones, despite the knowledge that I may never have my own little one.

Who knows, in the future if I meet someone to spend the rest of my life with (as cliche as that sounds) perhaps my decision will change. Or if my health improves, as some of my doctors have suggested is possible, then perhaps I’ll reconsider. Of course, if my health improves it all depends on me finding a partner anyway. But the future is something of an unknown for all of us, only time will tell what it holds. For now I have accepted the way things are and my current decision, and I hope that by sharing this others in a similar situation might be able to relate and know they are not alone.

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It’s been a while…

By Clare

On 1st January 2026

In Blog

Well it’s been quite a while since my last blog post, this year has been A LOT, but I am hoping things are finally starting to settle down and I can get back to writing more and sorting through the drafts I made last year (and maybe even the year before) and never got around to editing and posting!

So…the reason I’ve been so quiet is because for the first 6 months of this year I was dealing with a horrible living situation involving anti-social behaviour which culminated in me having to find somewhere else to live. And in June, thanks to my brilliant housing officer, I did.

In July I made the move from city centre life to that of village life (albeit a large village) and a lovely, slightly bigger flat. It needs some adaptations doing to make it more accessible and suited to my needs but it has the potential and is liveable while I wait for those to be done.

The change from city centre life to that of village life has taken some getting used to, especially the almost complete silence at night! Having grown up in the city I’m used to hearing constant traffic noise, sirens and here there is almost none! On top of that for the six plus months prior to moving there had been shouting and music until the early hours most nights, so almost complete silence was a BIG change.

But I am LOVING it!! I’m sleeping better and with quieter roads around here I’ve even been able to take Dolly out for a walk on my own in my wheelchair, and wheel myself to the local shops on my own! The first time I’ve ever managed to go out in my wheelchair completely independently. I feel like I’m finally manage to make the most of life with the energy I have available.

Living further away from my parents has brought its challenges, but it’s also forced me to be more independent, which can only really be a good thing. They still come daily to help me out and we’ve organised carers in the evenings to help with my pyjamas and compression socks, and make sure I’ve had some tea so my parents can have their evenings back. They’ve already had to come to my rescue and stay with me for almost two weeks when I put my hip out at the end of November, catching a nerve and ended up needed help doing pretty much everything. (That was also when we realised just how much adaptation is needed to my bathroom as I needed help getting on and off the toilet and its position in the bathroom made that incredibly difficult!).

Anyway this post is basically to say I am still here, and hoping to get back to blogging more regularly (Yes I know I’ve said that before!) now that things are settling down and my flat is feeling more organised and like home. That’s not to say I don’t have big plans to put my stamp on the place and make it more my own. Plus get more suitable furniture for this place as what suited my old flat doesn’t fit quite as well in this one. But they’re going to be done bit by bit and I’m hoping next year will be much less dramatic than this one so I can pace myself better! 2025 was definitely much more unexpected in more ways than one, but I’m ending the year much happier than how it started. And that’s what matters.

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