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Some good news!

1. I am getting a wheelchair in two or three weeks after being assessed (it was not a gruelling assessment – just a nice woman who had a quick chat and then measured me up!). It is an NHS wheelchair, so it will be on long-term loan to me and they will pay for upkeep/repairs. It will be lightweight and have a headrest and a cushion! I am hoping it will be comfortable.

2. My application for a Blue Badge (disabled parking permit) has also been successful! I think this will be really useful and take the stress out of parking in many situations. It may open up some new options for places to go.

3. The itching has improved. It is still coming and going but is much better and almost as significant is that the night-time (drowsy) anti-histamines i am on seem to be really helping my sleep. The combined effect is that i seem to be sleeping better and my baseline for activity has been raised a little and i feel less manky in general. I have had some really bad days, but in each case it has been one day of payback which i can directly attribute to having done something; rather than just a bad day for no apparent reason. I am liking this new phase very much!

I have left the house a bit more than usual (at least once per week if only for a gentle/brief thing) whereas before i was not going out other than for essential appointments for weeks on end. A big change for me. Things seem a bit more possible and i feel i am recovering faster from doing things. I am still needing to have a sleep in the day, but i am finding it harder to get to sleep until a bit later in the day and am sleeping a little less. Before, I would often get up, have breakfast and check my emails etc. then have no choice but to just crawl back to bed. I feel more alive now. It is not a giant leap, but it is such a welcome break from the drudge of the past year really, which has seemed so retrograde overall, maybe this is the start of a better phase… Early days, it has only been two or three weeks! I know i am getting ahead of myself and am probably overstating the change, but it feels dramatic to me. Fingers crossed this “side effect” of the anti-histamines does not wear off… my mood was really struggling before – the itch was really driving me into depression as it was hard to cope with. I am feeling so relaxed now in comparison and my other pains are better too!

The best things have been going to a local art gallery and seeing the Hokusai print “Wave off Kanagawa” with a friend, and then, a week later, going to Cherryburn with my partner, where Thomas Bewick the local woodcut print-making legend was born. The afternoon at Cherryburn in particular I felt really good and my stamina was good. It was the best I have felt for many, many months. The sun was shining down on us and I felt so lucky to have made it out and to be enjoying a day trip with my partner. It was fun. We even stopped off in a pub for a cuppa on the way home (yes, that is two separate locations in one trip out!).

3. I have some lovely visitors coming to see me over the next few months, some end of May, some Mid-June and then another in August and we are going on holiday with her to a cottage up the coast from here – I am counting the days til my summer holiday! I did not think I would be able to go anywhere this year as I have been finding travel impossible, and also the itching has really limited my ability to sleep anywhere but my own bed (if i am lucky) and i cannot go anywhere without a bath, as showers are also a big no-no. I am still a little concerned about it as my skin is so sensitive to “lumpy” mattresses (and a million other things), and painful even if not always so itchy, but things are much better than they have been and now i think i will survive. We will be close to home anyway if things go wrong, but far away enough to feel like it’s a holiday!

4. I continue to be able to read and have just read The Colour Purple, by Alice Walker. It has sat on my shelves for over a decade and i am so glad i decided to read it at last! So well written, interesting, moving and grounding. I loved it. I have also bought two books in a second-hand shop (it was so great to be able to go in and browse them last week on a quick trip out!). Lolita, by Vladimir Nabokov who several people tell me is worth reading but i have not read anything by him before, and The Lovely Bones by Alice Sebold. I don’t know which to start with!

5. Just remembered another good thing! I am doing more drawing. I have been inspired by Michael Nobbs and his “75 ways to draw more”. The results are a bit mixed but at least i am doing something rather than waiting til i feel good enough to do something i think i actually “good”. A few minutes here of there can produce something, and something is better than nothing! I am being brave and posting them onto Flickr, as there is a “75 ways…” group there. I have had some nice comments from people who are evidently much better at drawing than me, which is generous of them!

So in summary, life doesn’t feel so bad at the moment, long may it last.

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As i discussed in a previous post (https://ashy00.wordpress.com/2010/03/01/a-little-catch-up/) (and in the comments of that post) i am looking into wheelchairs. Today i went to a local charity for advice on what is available, what things to take into consideration, where to go to get the right one and such like.

The appointment was at midday and it felt early – i felt quite groggy and not properly awake, i was aching all over and felt quite weak. The appointment went fine and it was not too long. I had expected to try out different ones to see what suited me but in the end it was just a discussion. This was perhaps good as i am not sure i had the energy to be getting in and out of different ones. The woman was nice, but her voice was loud (to my ears) which did not help me hear what she was saying. I did manage to follow and i think i asked the things i wanted to, although she did not always answer too clearly. She did say in the end that they did not have any wheelchairs for me to try that would suit me, as we decided i need one with specific high back support, or even head support and good lumbar positioning. It was quite interesting that early on in the discussion she assumed i would just need a standard chair, without asking me at all about my issues or medical condition. It was not a major thing and she was helpful and open to listening and changing her mind, but i was surprised that even at a disabled people’s charity i was judged early on how well i look (though anyone who knew me would see i was seriously struggling! My partner could tell, i am glad she was with me). I would have thought they would have certain questions to ask before making such judgements. She did not ask about my medical condition(s), which is fine as it is not necessarily relevant, but to not ask directly about what issues/needs i have from a wheelchair was a bit strange, i thought. Anyway it was useful i think. I asked about reapplying for a Blue Badge (this is for disabled parking for those not in the UK) and also about the NHS wheelchair service and what to expect from them. I will try again for the Blue Badge at some point, despite being turned down before.

I briefly asked about scooters and powered chairs were mentioned but they did not seem viable options. I think i will see how the manual wheelchair suits me and how i find it affects my ability/experience of going out and that will give me more clues as to whether those other options could be useful in future. I think it is a big investment to get a mobility scooter for the number of times i am likely to use it. I cannot magically be able to leave the house much more often than i do now, chair or no chair; there are just so many other reasons i cannot leave the house, other than straightforward mobility issues. Unfortunately.

When i got home i took a while to wind down (despite not being awake in the first place!) as it took a lot of effort to get through the meeting. I went to bed after a while and had some strange sensations that have happened before.

The first has been happening quite often over the last few months, but i don’t remember it happening before that. It only happens when i go to bed in the day, not at night. I get these feelings of icicles running up and down my spine. It starts from the back of my head and runs all the way down my spine and into my legs in a wave of shivers and i feel really cold inside. Today i could tell it was going to happen and i took a hot water bottle and two hot wheat bags to bed with me and i still could not get warm for a long time. After about 3 hours i woke up (i had been asleep maybe an hour) and was so extremely hot i had to fling all the covers off! This is what happens: freezing, then unbearably hot. Very strange. Often i feel quite a normal temperature until i get into bed and it just starts up right away – today i already felt cold so i knew what was in store.

The second is a neurological-type thing. It used to happen a lot when i had a specific song as my alarm tone on my phone and i would hear it when it was not going off. Not like when a song is stuck in your head, but actually as if i was hearing it for real. It has not happened for a while but today it happened with my partner’s alarm. It went off and she turned it off, but i could still hear it. I took my ear plugs out to check if it was really there, and although i could tell it was not going off for real, i could hear it really softly still “playing” in my brain. Very odd. I am not worried as long as i don’t start hearing other imaginary things! I think it is something that happens when i am struggling/have overdone myself. If it continues she will have to get a better alarm ringtone, is all i can say!

ME/CFS Awareness

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