Tag: 2015 Page 2 of 7

So I’ve been a bit quiet…

On 17th September 2015

Wow time flies when you’re having fun or just busy! My hopes of blogging once a week during the summer must’ve been a bit optimistic, so I apologise about that.

Things have been going pretty well of late, sure I’ve had my bad moments but on the whole I’m managing to keep things pretty stable. In recent weeks I’ve had a few days out which have been absolutely lovely; there’s nothing quite like getting out of the house!

I’ve also had a few short trips out on my mobility scooter; not far but it’s a start, besides at one stage when I stopped it wouldn’t start again without switching it off and then on again so I’d rather not go too far until I’m certain we’ve fixed that problem!

Project Walking and the decorating physio is going well, getting up and down the stairs is becoming easier as my legs get stronger. Hopefully I’ll be able to embark on a walk up the road on my crutches in the near future and see what happens.

I’m having to restrict the time I spend on social media and generally at a screen which obviously helps account for my blogging absence too! I’m finding cutting back on these things is actually helping me do more with the energy I’ve got. Although it is a little lonelier seeing as most of my friends and social life is online. But at the same time I’m enjoying being able to do a bit more around the house.

In other news I turn 23 next week. And I don’t know how that happened! It doesn’t seem possible that a year has passed since my 22nd birthday. I currently have no plans for my birthday but am wondering if to do another JustGiving fundraiser like I did last year. Let me know if you think it’s a good idea and I’ll go about setting things up!

I’ll try and blog again soon, especially if I decide on some birthday fundraising again! In the meantime I hope you’re all as well as possible! Take care!!

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Project Walking: A New Type of Physio

By Clare

On 13th August 2015

In Goals

For the last few months Project Walking has been put on the back burner, I was either spending almost all of my energy on university work, coping with the loss of a loved one or simply just too poorly to attempt it. But I’m happy to say things are now on the up and I’m feeling a lot better than I have been.

Another reason things ground to a halt on Project Walking, was because the Wii Fit has been packed away while the living room is decorated. As this was my main form of building the strength back up in my legs, I’ve had to have a rethink of how to do this while the living room is being done up.

Now I’m well enough to start building the strength back up in my legs again, I’ve established a new physio routine. Decorating. An hour or two every other day is spent helping with the decorating going up and down some steps, standing and stretching and when I start getting tired or increased pain I stop. Not only does this help me with strengthening my legs (and therefore hopefully my ability to walk further) but it also means I’m helping out, doing something useful. And at the end of most days there is a little more of the room painted; which I can say I did.

Obviously there are some restrictions to when this exercise can be done; because it involves using steps it can’t be done when there’s no one else in the house. It also depends on the day, if I don’t feel too good I don’t do it. And often a days rest is needed in between decorating days; not so much because I’ve overdone it but to make sure I don’t overdo it and give my legs a chance to recover a bit. I don’t want to push it too far too soon.

It may sound a bit of an odd way to build up my muscles and I don’t want people thinking I’m well because of what I’m managing. I’m still moderately affected by M.E. The days I do decorating I don’t do much else, the majority of the afternoon is spent resting (or dozing). But I know if I want to get back to walking up the road I need to work on my leg muscles, and if I can help my family out along the way it’s a bonus. I depend on them so much it’s nice to be able to give a little something back, even if it is a slow process. And so far it seems to be working; I still struggle to get up the stairs some nights, but it is slowly getting a bit easier. Now that’s something positive to focus on!

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For Anyone Who Uses The Family Bathroom…

By Clare

On 15th July 2015

In Essential Living Aids

…I feel I should explain the notice above the lock on the door.

It was an idea that came about from a friend a few weeks ago, after many close calls of me almost falling and the odd false alarm where my family thought they’d heard me calling for help but I’d been perfectly all right.

You see one night when I wasn’t particularly steady on my feet (well less steady than usual, that is) I decided, since I was in need of one, I’d have a shower. To be on the safe side I told my family I wouldn’t lock the door, ‘just in case’.

At this point I should point out the lock on the bathroom door is one of those which, if necessary, can be unlocked from the outside for such eventualities but not locking it means there’s less delay.

Anyway I went in the bathroom, got in the shower and a few minutes later heard a banging noise over the sound of the shower. I opened the shower door to find my Mum trying to open the locked bathroom door (thinking it was unlocked like I’d said it would be) because she thought I’d called for help. Dad was trying to find a coin or screwdriver to undo the lock with when I unlocked it, saying I hadn’t called and was fine. But I felt guilty for sparking such a panic, and for saying I’d leave the door unlocked but automatically locking it when I got in the bathroom.

That night I told the M.E. community on social media about this and one friend suggested putting a notice on the door saying ‘Do Not Lock’. Obviously being the only bathroom in the house we thought this might be a little non-specific and people would perhaps think they weren’t allowed to lock the door either. However the idea was in the right place and so the laminated piece of paper, white-tacked to the bathroom door was born.

The sign above the lock on the bathroom door

It reads “CLARE DO NOT LOCK WHEN SHOWERING OR DRESSING!!” It was made that specific so in times of very poor cognitive function I know I can lock the door at other times. I’m only really in danger of falling or getting into difficulty when showering or getting dressed, and I always make sure everyone in the house knows I’m in the bathroom at those times. It’s slightly odd announcing to the house that I’m going to get dressed or have a shower but right now it’s necessary; it also means they’re on alert for me calling should I find I can’t manage myself or get into difficulty.

The best bit about this notice is IT WORKS. Since putting it up there have been a number of times I’ve gone in the bathroom to get dressed or have a shower and I’ve automatically locked the door, then read the notice and unlocked it ‘just in case’. Fortunately there haven’t been any times when I’ve had to call for help because of a fall, however I do frequently call for help with drying the lower half of my legs and getting my trousers on. It’s just one of those things I can’t always manage by myself right now.

As well as explaining the point of this notice to anyone who thinks it slightly odd, I want this post to serve as a thank you to the wonderful person who suggested the idea. And if anyone else has similar problems perhaps this idea could help you too.

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Television Woes

By Clare

On 10th July 2015

In ME Awareness

Most days I can’t watch TV past a certain time of day, usually 8 or 9pm. Especially but not exclusively if I’ve watched some during the day. Time at computer screens also seems to impact on my ability to cope with the television.

This is a difficult aspect of M.E. to explain. Most people sit down, turn the television on and watch a good program classing it as a restful and relaxing activity. But when you have M.E. that isn’t the case, in fact sometimes it can hurt to have the TV on.

And this is what I am finding at the time of writing. It reaches a certain point in the day, well more accurately evening, and I can’t stand having the television on. It physically hurts my eyes and head to watch it, or even be in the same room with it on. It’s almost like my brain can’t cope with the moving images and flashing lights that come with having the television on, in short it makes me feel a lot worse and so I avoid it.

This means the online catch up services have a steady demand from me during the day as I catch up with the shows I want to see but am physically unable to watch in the evenings. You see for some reason, seemingly unknown to me, I can cope with the TV during daylight hours. However once it starts getting late and the light changes it’s a different story. Whether it is the lighting; natural light making it easier to cope with the flashing lights/images of the TV or whether I just reach a point of exhaustion which means my brain literally just can’t cope with it I don’t know, I can only guess.

I’m currently awaiting new glasses, adjusted for my astigmatism, and I’m hoping they might help; perhaps it’s just my eyes having to work harder and getting tired that causes the problem. Like I say I really don’t know what the cause is, I just know it’s immensely frustrating not just for me but also for my family, since I have to leave the room most nights if they have the TV on past a certain time, other nights I can cope. It all seems to depend on what I’ve done that day and how long the program is on for.

Why am I writing this post? In an attempt to explain something I’m facing everyday, to make people more aware of every aspect of M.E. even the one’s which seem most unusual and difficult to explain.

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