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I see on reading my last post that well over a month has passed. I had a great time with my sister and hope she will come again soon as possible!
Since then I have had a nasty cold virus which knocked me back a bit. Very frustrating as although I am now recovered it took much longer than a cold should and I have not had the stamina I had previously. I still don’t actually. So much for the stability I was talking about in my last post! Things are stable, but only because I am doing very little most days.
I have been out in my wheelchair for a few walks, and that has been lovely. I hope to do that regularly now that the weather is warming up as even half an hour out of the house can really be beneficial. I like it when I see unexpected things. The first one I met two horses, one was very interested in my wheelchair and it only just missed being covered in horse drool (I had stood up to say hello to them, and was glad I did as horses are a bit intimidating close up, especially when curious!). The second time I saw a frog popping up to the surface of the water at the pond, presumably to breathe, then disappearing back into the murk. It did that several times. Then the last walk it was sunset (I got very cold!) and I saw fish noses or fins then a ring rippling out from where they surfaced to feed. There were lots of them, making circles all over the place. The water was very still so the ripples lasted for ages. It was very peaceful.
I have also been having some massages and they have been great. After the virus I just ached all over, right in between my ribs, front and back, from coughing and like I had strained myself from the neck down really. Also due to my blocked nose I was better sleeping on my back as it seemed to stay clearer but that made my lower back pain flare up quite badly. I cannot have massage on my legs due to my neuropathic pain and general tenderness, but have really felt the benefit on my upper body. It has taken about three sessions to feel better though, to convince my muscles to give in to it. Obviously I will always have pretty much constant muscle pain and tension but I think it does help to ease it off every now and again. I have not had acupuncture for a long time but I will go back in May and stop the massage again soon (maybe just one more?!). I am not supposed to be having them as my acupuncturist said he did not think deep massage was good for me – shhh! Well I am sure it’s only moderate massage (not deep) so it’s FINE! Also it feels so good, so tough bananas…
In my previous post I also talked about wanting to use my energy for more creative things, having put so much into my benefits application so far this year and having had little energy left for fun or creativity. Due to the virus I have not done a lot, but I have been making some postcards for my friend, and that has been fun though each time I do one it creates much neck and upper back pain for a couple of days – I need to find a way to sit that is better but there seems no magic answer. I need to try some office chairs in a shop and find one that is supportive in all the right places, but have yet to make that trip out. I think that drawing (and other creative activity) by nature is hard to manage as when you concentrate on something like that you cannot help but tense some of your muscles as you draw. When those muscles have the stamina of a gnat, that causes pain very quickly! I have been enjoying the challenge of the postcards though and the sharing of it with a friend (she sends me a card she has done and I respond in kind).
The other thing I am classifying as creative activity is gardening. The weather has been lovely and I have been getting that spring feeling and my partner has been helping me by weeding, chopping things back and preparing pots for me. I have sown some flower seeds for the garden and also some herbs indoors. My cold frame is up and things are coming along nicely. I hope we will tackle some veg seeds next weekend – carrots, beetroot and spring onions!
I have also started taking some digestive enzymes over the last couple of weeks. I will blog about that separately…
Well it’s been a rollercoaster of a week, but I have emerged fairly unscathed. I have surprised myself actually!
On Sunday, we went out to a concert (yes, again! Second of the year – get me! I know!). It was Frazey Ford and her band. The venue was wheelchair accessible, although it was not that easy as space was tight to get around as it was an old building. The good thing was how small the venue was in terms of audience, it was nice and cozy. I was really unsure if I would make it and the run-up was not good. I did make it, though I was in quite a lot of pain during the concert despite the painkillers and was constantly writhing about. I am sure the percussive sounds my joints were making added something to the music. I really enjoyed it and I actually love her album “Obadiah” even more than I already did as I heard lyrics I had not previously noticed (she does not always sing so clearly, not a criticism, just a fact) and also I am remembering her singing it in person now when I listen to the CD. Her voice is just amazing and we were front row (wheelchair is good for that).
I am left in particular with some lyrics from Gospel Song going through my mind, which I find very calming and take me out of my body quite nicely: “Oh, beautiful clouds, I’ve been sailing through. Oh golden clouds, I’ve been sailing through you.” Check it out for yourself!
On a musical note, I just got Antony and the Johnsons new album “Swanlights” and I love that too though I have not listened to it many times yet. I am enjoying music more these days, though I can only tolerate certain things. It is so good, as for a while I really could not bear music at all due to my neurological problems. I am even listening to it really quietly now as I type. This is a big deal for me as I find it hard to think straight when there is music on, or tv, or any noise. It is nice to challenge myself occasionally!
Another good thing that has happened this week is that despite the difficult appointment on Monday (the day after the concert) and the fairly drastic emotional response I had to it (plus the usual payback from doing two things in a row) I managed to go for a walk with my partner in the woods along the road from our house on Wednesday. I was in the wheelchair and it felt good and did not make me feel any worse. In fact it was a great stress-buster and we were both smiling despite the greyness of the day. Well, my partner says she was smiling, but I cannot see her when we are walking. I took a few pictures along the way. They are taken with my phone, so not brilliant pictures and it was a cloudy day but I just wanted to remember it and maybe you will enjoy getting a flavour of it.
This one is of me with the apples we scrumped!
Another good thing, somehow among all the stuff I have been doing, my more erratic than usual sleep pattern and feeling quite bad at times I have managed to read How To Be Sick by Toni Bernhard. I have really enjoyed it. It is the first book I have read on my Kindle, which I think made it easier. I might write a bit more of a review soon.
I went on holiday a couple of weeks ago, and overall it was great! I was a little anxious about it beforehand as so many symptoms threatened to put a damper on it. Also I was feeling quite low in mood and really wanted it to be good – that kind of need is a dangerous thing.
My and my partner went on holiday, with our dog, but also a friend joined us half way through and stayed with us a week so we had some time with her on holiday and then at home as well, which extended the holiday vibe – so a good ten-day holiday for us.
We rented a cottage on the coast, actually very close to home, as travelling is something I struggle with and a long journey would have been something I would have to recover from once I arrived. Plus, if things were really bad, we also had the option of coming home again easily. It was lucky in the end that we did that as between booking and going I got my wheelchair. On the way home (because our friend had joined us mid-week) my partner had to make two trips as our little car was unable to take all our stuff, plus wheelchair, dog and three people.
The cottage was “bijou” – small and beautiful. It had a cabin-like feel with long painted boards on the ceiling and several times after being pushed in the wheelchair (which makes me feel pretty spaced out), or just when feeling a bit unsteady in general, I really felt like I was on the ocean wave without my sea-legs. There was a nautical theme with lighthouses, driftwood and shells aplenty and it was lovely and felt very “holiday”.
The beds were pretty comfortable. I was very worried about that before we went and had even rung them up to ask about them, after the very bad bed experience on our last holiday the winter before last. I did have a lot of nerve pain while i was away, both in bed and just randomly in the day which was quite draining and disruptive but I did sleep pretty well as I have started to take Eszopiclone and I think it really helped me to sleep in the different surroundings and with the nerve pain, which certainly allowed me to do a few nice things while away.
So what did we do?
We travelled up on the Saturday, but did not leave home until 3pm as the cottage was not available until 4pm. This worked quite well as I usually am not up to much until then and need a midday nap anyway. We got there and had a quiet evening but we did go along the road to find a view overlooking the sea before we settled down for the night. You have to see the sea, right? (It was not this late when we went that first day, but this is the same view).
The village streets were far from wheelchair friendly and I had to get out a few times when we went about (not to mention the time when I flew through the air and landed on my feet when the wheelchair came to a very abrupt stop in a big hole between some cobbles… I am a human cannonball… I was fine but my partner developed a huge bruise where her foot had hit the tilt bar at the back – ouch!).
On the Sunday it was really sunny and lovely so we went for a wheelchair walk, first along the river, which was the perfect width of path and really easy (except for the massive steps at the end), then down to the beach. This was not very easy as it was a steep hill and we didn’t properly think through the return journey (what with our sense of adventure and holiday excitement!).
The beach was lovely and warm. We (well not me, to be honest) dragged the wheelchair down the beach with us so that we could get to the water without leaving it miles away. I threw caution to the wind and decided to paddle. My nerve pain is worst at my ankles and is triggered by water and temperature change so it was a bit risky, but basically I just tip-toed so they didn’t get too wet. It was lovely and warm and frankly I would have just gone for a swim if I could have. Lots of people were and it was packed.
After a sit down, it was decided that my partner would take the wheelchair back up the beach and go along the car park and I would walk along the beach to the next path and meet her there. The car park was large gravel and like one big pot-hole so she could not push me along there, so I had to walk and so I might as well enjoy the beach. We hoped the other path would be less steep that the one we came down. The sand was very soft and although I enjoyed the walk it felt much much longer than it looked and it was hard going. I found some nice shells and all was sparkly and beautiful, but by the time I got back to my chair I felt quite awful, weak and POTS-like. I sat a while to get my breath back and let things calm down before I then had to walk more (huge gravel then steep hill!). I managed but it was way too much. On the way back to the cottage we sat in pub beer garden for a quick drink and it was sunny and quiet and I was comfortable sitting in wheelchair and felt ok. I really needed the “tonic” part of my tonic water! By the time we got back to the cottage though I had completely crashed. Just lay on sofa in zombie mode for some time. We were out for several hours but the time just flew by and we both had a really nice time being out exploring together so it was worth it.
After that I had a couple of quiet days resting and recovering (with a lot of nerve pain), and our friend arrived the Tuesday evening and we went out to the Indian restaurant around the corner, which was really good. I was really careful about what i chose and basically just ate rice with a little bit of the different dishes to taste – it paid off as I had no IBS flare-up afterwards! Amazing! The noise really got to me in there though, and after I finished eating all I could do was sit with eyes closed as I could not even follow the conversation with all the other noises there. We could not stay long. I felt better once we left and got some fresh air.
On the Wednesday I still did not feel too good but after an afternoon nap we went to a local second-hand bookshop. It was only ten minutes drive and was fully wheelchair accessible so I knew it would not be too hard. I was concerned that my brain-fog would prevent me from being able to focus enough to choose anything, but I found 4 books which all look really interesting:
The Diary of a Dying Man by William Soutar – (This is available on Amazon, I have not chosen that link, but it’s easy to find). I have read the first few pages and I think this will be a really interesting book. It is witty and also has already come up with some parallels with my life; early on he discusses various things people tell him will do him good (pills, potions, foods) and he says that he would be taking things constantly if he listened to all of this advice. I know that feeling!
Longshore Drift by Katrina Porteous and with Linocuts by James Dodds – this is the first book I really focussed on when I went in. It was on a little display and I cannot believe that no-one else had grabbed it before I got there. A little gleaming gem. The poem is very interesting but it is the linocut prints that have had me reaching for the book several times while away and also since I got home. They are just amazing and there is always something new to see. As I have tried to do stamp carving (I don’t know what to call it really), I can see how he has chosen which parts to cut to make the black image/lines and it is interesting to observe his techniques and choices. The detail is amazing; as is how simple lines can do so much.
Southern Mail/Night Flight by Antoine de Saint Exupery – I have only read Le Petit Prince before, but this is described as poetic and it sounded interesting, though I have never really been interested in flying… But if birds do it, then it may be something I can get into!
The Memoirs of a Survivor by Doris Lessing. This, she says, is part autobiography; but it seems from the description to be a kind of dystopian novel and by far the most frightening-sounding book I have chosen! She is someone I have heard of in terms of her feminist and political views, but I have never read anything she wrote before, so I will see how it goes.
That evening I stayed in resting while they went to pub for a while. It was nice to have much-needed quiet time but when I got lonely they came back for a chat before I went to bed, which was really nice.
The next day, Thursday, the sun was out again so after eating breakfast outside on our tiny bit of decking, I walked down the hill (funny little path through people’s back gardens) with my friend and we went to explore the estuary.
We took pictures of boats and I tried to do a little sketching but it was not really the best circumstances as it was a bit on the parky side with the cool breeze and also not very comfortable/relaxing to sit. Sand was too wet/squidgy so we sat on a concrete block for a while. Had to walk a little way up a hill (very slowly!) then rang my partner to come get me with wheelchair. We stopped for a cuppa in tea shop on way home. I had a big sleep then we watched DVD of The Girl With The Dragon Tatoo, which I really enjoyed. I was the only one who had not read the book, but they said it was a good film version of the original.
Friday I felt pretty rubbish. We tried to go to the pub and play cards in the afternoon but it was too noisy – first a large group of middle-aged women squawking and screeching in hilarity at each other, then when they left another gang of younger people who all laughed really loudly together in great bursts. I felt a bit sad that I can’t enjoy being in groups like that anymore. I could not focus on my cards while that was going on, and it was really uncomfortable for me, so we had to leave. We played a game later in the cottage, but I was still not feeling too hot.
Saturday we had to get up early to leave by ten. My partner had already been home and back again by then with the first load. We actually left at 9.30! I tried to rest once home but my body/brain had obviously become fairly confused by it all and gone into emergency mode. In the afternoon and evening I felt hyper and weird and could not rest, adrenaline taken over and although I knew it was not real energy and I tried not to do too much, I did unpack and tidy up a bit as I knew I wouldn’t be able once it all caught up with me and it is nice to get sorted.
The next couple of days I was in bed until mid afternoon both days and not feeling great but we managed to have some gentle chats, watch a bit of TV and have half a game of scrabble before my friend left early on Tuesday morning.
So it was a mixed bag, but with some really nice experiences. I would have like to have been able to go to the beach a bit more but the inaccessibility mixed with the torrential rain at times (I forgot to mention that!) meant it did not happen. We could not drive around the village much as the parking was so tight we could not move the car much at all, which is the only reason I would not stay in that actual cottage again.
Since the holiday I have been feeling generally pretty awful much of the time, and my cognitive function has been very low for me which has been a surprise really. I wonder how much is due to the new sleeping tablets I am taking. I am going to have to experiment with them. Writing this has taken f-o-r-e-v-e-r!!!
I have however been out a couple of times since being home again, just taking advantage of the fact that my partner has been around a bit more and also not wanting to waste any last sunny days before the end of summer, which feels somehow imminent and over much too quickly. We went into town with the wheelchair, which made it the most pleasant trip to shops I have had in years; it really helped and I bought a few things while I had the opportunity to try things on – it was actually fun! Also we went to a local lighthouse to enjoy a sunny afternoon and just sat and enjoyed watching the waves and feeling the warmth. A gentle but lovely trip out. I finished my camera films off at the lighthouse so I am sending my holiday snaps off to be developed soon! I did not take as many as I would have liked, but I hope there will still be some nice ones there.
Well, for the first time in a VERY long time i had a proper night out! I have been out for a meal once in the evening in the last year with a friend, but it was a very early meal. I have been out for some afternoons but am usually home by 6pm. The last time i can remember being out late is my sister’s wedding: May last year. So this was a big deal!
My partner goes out to concerts sometimes and when buying tickets always asks me if i think i could come. I always say no, as previous attempts have resulted in trauma at the event, or more usually a wasted and expensive ticket. This time i thought maybe it was possible as i was feeling a bit better at the time of booking. Also with the new wheelchair i would hopefully be more comfortable/supported and have less pain during and afterwards. The venue is nice, familiar, small and accessible. Plus we got one ticket free as a disabled person plus carer so there was less pressure. All good.
The day before yesterday i felt really awful, very dizzy and light-headed with the weakness that accompanies that POTS state. I was in bed most of the day. Yesterday i woke up feeling better but still spent the morning in bed and did as little as possible until getting ready to go out. I felt ok and it was so nice that my body was co-operating.
The concert was really good. I did not find the noise too loud as the acoustics are great at the concert hall, it is a clean sound. The last concert i went to was in an arena and it was so loud and bad quality that i was actually reduced to tears – it was so painful and i could not believe all the other people there looked fine and like they were not noticing anything wrong! I did manage to stay (just) but i found it very uncomfortable. I knew this time would not be the same but i took ear plugs anyway! I was so pleased to be in the wheelchair as the chairs there would have been no good for me at all. So glad i have it at last.
We had a good view and when Eliza Carthy came on stage i literally started crying (for a good reason this time!). I was suddenly overwhelmed to have made it out, to be there at all. All the good memories/feelings associated with her and the times i have seen her perform in the past came over me in a flood and i just wanted to give her a hug to celebrate seeing her again (of course i did not, if only because the stage looked too high to scale!). After a little cry i felt more able to relax and enjoy the concert without all those feelings getting in the way; more like a normal person would enjoy it, rather than a fun-starved ill person! The lyrics at the start when i was crying were something like: “thank you lord for letting me live another year” and i felt my own gratitude for being able to go to a concert again.
The concert was called “Murder, Misery and then Goodnight”, after a Kristin Hersh album. She was there, as well as Handsome Family, Tim Eriksen, Eliza Carthy and Howe Gelb. It was ” an evening of the darkest twisted murder ballads” which sounds miserable, but they actually sometimes had a darkly comic edge to them, and there were lots of laughs. It was part of an Americana festival and the tone was a mixture of folk and blues/gospel – i don’t know how to describe it; a bit like Oh Brother Where Art Thou soundtrack! There were some great songs where we all sung the chorus and in that small venue it worked really well. A man played a saw, as well as some other odd percussion things and it worked really well with the sinister lyrics. I was amazed!
Tim Eriksen started the concert standing at the front of the stage in a cloud of smoke holding just a tiny battered book and just sang in that real southern style, completely unaccompanied and it felt like being at the theatre! I knew then it was going to be a great night. What a powerful start. He looks like a really interesting artist too, i had not heard of him before but his biography is very interesting and varied and he worked on the music for Cold Mountain and helped teach the actors to sing for it, apparently! You can hear a bit of him here.
Eliza Carthy was just amazing. My partner says that they all lead on a similar number of songs, but it seemed like she had a much bigger input. I think this is because she was able to join in with other’s songs, either to sing or play the fiddle as back up to the lead artist. Sometimes it was clear that this had not been practiced and she just joined in, tentatively at first to get a feel for the chords and song then just went for it – amazing to watch. There was a spirit of just joining in on each other’s songs, having a jam, but some looked more confident to do that than others. Her own songs often started with just her voice, singing to a light foot tap and it was spine-tingling, then the song would gradually build to full instrumentation. I rarely listen to her music at home (I only listen to a very few select artists actually as i often find it hard to listen to music, and can rarely multi-task – i.e. listening to music is an activity in itself, not a background thing which limits when it can be done) but i am a huge fan. Her talent and what she has done to shake the dust off folk music is admirable. If she is playing near you, and you are able ,go see for yourself! Even if you are not usually a folk music fan, you will not regret it. Quality like her do not come along often.
I felt the concert was really long, in a good way, I felt that the effort of going was worth it as they gave us so much, so many songs and a great performance. It filled me up with good experiences/feeling that i can draw on for a while. It also gave me some confidence that I might be ok to do the odd different thing while on holiday (coming up in a few weeks) as i have been worried that i will just feel so awful the whole week it will just be a change of walls rather than much in the way of new experiences. We shall see. Anyway, i am so happy and grateful that i went out last night, whatever comes next.
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.
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!
what is this? a positive post on my “illness” blog? wonders will never cease! brace yourselves – no moaning will follow!
On Wednesday i received a wheelchair from a hire company. I was expecting a visitor for a couple of nights so got it in time for that (but she has postponed her visit for another time), although i am keeping it for two weeks in total as my Mum is also visiting this Thursday for the weekend, so we can hopefully get out of the house a bit. I am working on a list of possible excursions so we can pick one when the time comes, according to wellness and weather.
On Friday my partner took me on a “walk” in the wheelchair, with the dog around some streets by our house for a test run. I held the dog lead and she pushed me. It worked pretty well, and the wheelchair is light and easy to manoeuvre (It is called Breezy Moonlight, in case you are interested, and is very comfortable). The only problem was that if i had to pull on the dog lead, it did affect the direction of the chair, but this was ok except when she was barking and pulling madly at another dog! I saw streets i have never been down before and we were out half an hour or so and the sun was even almost out… I was not feeling great however, particularly earlier in the day so was amazed…
…by what i managed on Saturday! I booked a shopmobility scooter for midday and got a taxi there, with my partner. I did not think i would be feeling well enough to stay out long but was just desperate for some fun!We went around two or three shops, and i bought some knickers (i have been desperately needing some new knickers for ages but have not been able to get to a shop for months, and although my partner can get some for me, i really wanted to chose my own! So i was very happy with that) and then we went to Fat Face, which i love, and i got some dark grey cords and a stripey zip-up jumper with a hood, and got a free t-shirt 🙂 After all that excitement we had lunch at my favourite place in town, i had a plate of anti-pasti (sundried toms, mozzerella, beans, little mushrooms, grilled courgette and aubergine etc etc) and then a cup of thick hot chocolate that you have to eat with a spoon! Yum. By this time it was 3pm. I was starting to fade but me partner just had a couple of things to get so i decided to stay with her and go home together. We eventually returned the scooter at 4pm and got a taxi home.
I was on such a high that although i lay down a while i did not go to bed properly when i got home, and had a strange high in the evening where i was warbling on about rubbish and singing and was concerned that i may be annoying ( i was assured not, but i am still not sure!). I was so nice to feel so happy and to have been able to do so much after what seems like weeks and weeks of feeling bad almost continuously.
I slept well last night, and went back to bed late morning for my customary extra hour’s nap, but have not yet felt the “pay back”. In fact today has been good as well! I have been out for an hour in the wheelchair in the woods near my house (which i have not been able to set foot in for literally years) and we covered a lot of ground – it has hardly changed since i was last there though, which surprised me. It was nice to smell the woods, which had a hint of autumn about them and toadstools popping up all over.
Then i came back and made two little crumbles! I really miss cooking and feel a real sense of achievement. They also taste great! one is plum, and the other is apple and damson. They were actually very quick and low effort to make. (I don’t have to do my own washing up, so lucky!) I have a little headache brewing despite a quick afternoon nap but am fairly unscathed and just so pleased to have been so active and been out and about so much. My good energy has timed well with the the weather too as it has been dry and even a bit sunny.
So happy days! Just going to rest up as much as possible over the next three days until my Mum visits, and hopefully i can carry on this good trend…