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Hello all,

I am not sure what to write about today, or how much to say. I am bored of writing how I am, which symptoms are bad and so on, though I know it serves a purpose for me in terms of tracking my symptoms and health, which is one of the reasons I do blog. I am bored with it though, and so it seems is my partner, understandably. We want to escape the never-ending discussions of how I am, which parts hurt and so on. But how? I honestly do not think it is possible.

I do not need to tell you readers who are also ill and living with other people the difficulties of being in any relationship when there is an unwanted entity (the illness) hovering around affecting everything we do, or more usually cannot do. Things are ok, and we are coping but I am just feeling a bit emotional at the start of this year.

As well as wanting me and more especially my partner to have a break from it all, I am deeply worried about a friend of mine who is in hospital. I have heard from her dad that she has had an emergency operation and is very unwell, but nothing for a few days and I cannot help but think about her and her start to 2011. She has not even been able to open her Christmas presents yet. She is on my mind a lot.

I think I am also just in recovery from going away at Christmas. I feel a sense of achievement and adventure at having gone away – I spent a few days with my partner’s family. It was good and I am very glad I went in many ways. I was made to feel really welcome and they tried really hard to accommodate my needs and it was nice to feel part of something but it was also pretty hard for me at times.

The main issues were the travel (which took 4 hours on the way there and 3 on the way back; even as a passenger that is really a lot for my poor brain to cope with. I find it very challenging neurologically to be in motion and to have such a lot of visual stimuli rushing past at the same time); the heating, which despite other people saying they felt cold was on really high and it was the hottest house I have been in for a long time (which obviously is really bad for me in terms of POTS as it means my blood pools more easily and less gets to my brain which makes me feel worse and have lower stamina and more neurological symptoms, like tolerance of noise…); and also the noise!

When there is noise my stamina is very limited and the combination of Xmas music on a loop and/or a tv turned up loud for some of the family who can no longer hear very well (and refuse a hearing aid) as well as the conversation of up to twelve people on top was at times hard to bear. Added to this was the noise of a house full of people when I was trying to rest, especially when a few drinks had been had, despite my ear plugs! People really did try so I am not blaming them, it’s just that normal festive behaviour and this illness do not mix. It is not like everyone should sit and shiver in several jumpers in silence just so that I can “do” Xmas!! It would not be fun for me or anyone else that way.

Overall it was a successful visit and I would take on the journey again when things would be quieter and hope that perhaps I could be able to leave the house when there next time to explore the city a little. It did feel strange to just be in the house all the time and not be able to situate it or explore; which seems ridiculous as I rarely go out to explore my own city, but when you go somewhere new I suppose you feel it more keenly that it is the normal thing to do. I know there were art galleries within a ten minute radius, and that hurt!

I have been feeling a bit stir-crazy actually and the trip away almost added to it for the reason given above. It gave me a sense of adventure if anything! I have not left the house much for a long time, other than for appointments, and the weather has been a big part of this. It has been just freezing with snow and ice everywhere – hardly wheelchair-friendly. I did go over to see a friend before Xmas and that was really nice, though it felt so surreal and I realised it was nearly a year since I had visited her home. She has had to visit me most of the time in the last year. Another reason is that my partner is just so busy and there is no-one else to take me out. I really find it hard to go anywhere without my wheelchair and that means being accompanied. I need to perhaps just take a taxi sometimes and sit somewhere interesting and comfortable for a while, but finding somewhere comfortable (in terms of chair, but also noise etc) is quite tricky.

Good things already planned for this year are a lecture about printmaking at a local university at the end of March. It is just an hour so I am going to give that a try if I can. Also we have booked tickets to see Iron and Wine in concert, which is also not for a while, but something to look forward to. Some of the most memorable and best things I did in 2011 were going to concerts, which has become easier now that I can sit in my wheelchair, so I hope to keep finding good people to see this year. It is great to go out with my partner and share such experiences with her. We don’t do enough fun things together.

It is my birthday this month and some time has been kept clear to do “something”. It is not yet clear what I will be up to doing, or what the options are but I am looking into it!

I hope to continue with my art immersion at home (see blog post on my creative blog) and finish the painting I am working on and move on to the other many creative things I want to work on. So many ideas, so little energy and ability! Never mind, art is a good distraction from illness. I also want to read more. I have got a Kindle for Xmas, though I had it early, and I am really loving it and how much easier it is for me to read with than a real book.

Well, I have got over the swine ‘flu, if that is what is was; at least i have no obvious symptoms now. My energy levels have not been great and over Xmas i have felt particularly bad in the mornings and had quite a lot of POTS symptoms early in the day, despite my medication. I have been sleeping until 10am or later, having breakfast and sitting for a while, then going back to bed (perhaps after a bath) until 2 or even 3pm. Only then has the day began and i have felt able to talk, watch tv, move around more easily etc. Some days i have felt reasonable for only very short periods of time, and a few have been a bit better with the whole evening being pretty good. My mum came to stay and my partner went to her family; so it was just me and Mum for a few days. She looked after me and gave me some massage and reflexology in small doses and it was very nice and relaxing.

She drove me to the beach on Xmas day and i sat on a cushion in a carrier bag on the frozen sand. The sea was a steely blue and the sun was setting (behind us, but the sky was nice colours anyway). It was nice to go somewhere. I enjoyed watching her play with the dog by throwing big chunks of seaweeds for her to run after. They had an intense play then we went back home. The moon was out, just a slither.

I hope i can reel my body clock back in soon. It is not that different from usual, as i always have to go back to bed for a sleep in the day, and try to make it as early as possible so as not to affect my sleep in the night, but waking up at about 9am would be better. Waking later is messing up my medication schedule and i keep forgetting if/when i have taken my tablets… not good! I think i have just needed more rest and had less stamina recently with my viral episodes, but i would like to get over that phase if at all possible and get some life back!

Just before Xmas i went to the doctors for a full blood count and ESR (Erythrocyte Sedimentation Rate). These are blood tests to look at inflammation and whether the body is fighting infection. I went to the doctors because my lymph nodes are really lumpy in my groin (and in my neck but that is more usual for me). The results came back that i may be anaemia  (this is the only information i have been given so i assume the rest was normal – no lymphoma then? Phew.) so i had to go back for the second type of iron test to check my ferritin which is the body’s stored iron. This happened last time as well and i had the same result. I have not had the second result back but i imagine my ferritin is a bit low also, as it was last time. Last time they did not suggest i took iron supplementation as it was only borderline low. Seeing as i have had no periods since then i am a little surprised it does not seem to have improved, so i will be taking some iron tablets myself whether they advise it or not, once the result comes through. I do take a multivitamin already but it does not have much iron in it. My limited diet is obviously leaving me short, despite my efforts. I wonder what else i am deficient in? The nurse did say that having a virus can cause your iron levels to dip… apart from having something most of this year, it could be said (as my Mum pointed out) i have been fighting something for nearly 11 years! So i thought that was funny. Maybe i also need more nutrients for my body to cope with this attacked/stressed/unwell state?

I am going back to see the POTS specialist mid-January. Last time i went it was all very gloomy as things had been so bad in those past 3 months before the appointment. These past three months have been much the same (though with slightly different problems) and i am sad to have to go back and report no progress at all, and that actually i cannot tell i am on a higher dose. Maybe all this other stuff is preventing progress. I wonder if she will have anything to suggest/say.

I want to go back to the Osteopath in the New Year. I am not sure that i am well enough for regular appointments but i can only try it and see. I feel i have not really given it a proper go yet as i have only been twice (?) as i had to keep cancelling due to not being well enough to go. I would go every three weeks if well enough, but as i would have to rest beforehand and it wipes me out/gives me headaches afterwards it really takes a lot out of my schedule. I think i will try to get my hair cut, go to the hospital appointment and do any other things that are pressing before i start back with him. It will take over/dominate my opportunities for going out really, unless things improve a bit. (That would be nice). I would like to be able to do some non-health-related things a bit more often as they are few and far between of late.

Oh, i did go to the nature reserve with my partner before xmas and it was a beautiful sunny icy day. I took some pictures of a swan, which waddled up close to me. I have not had them developed yet… it was exciting (to be with camera) and so good to go out together for a little walk.

So, there have been some nice times grabbed here and there! It is always hard to not be operating well when there is some occasion or something happening. To have visitors only adds to the feeling that there are so many things we could be doing if i was only feeling a little better. I was so relieved to not have to travel this year – i really don’t think i could have – but also i cannot be left alone when this bad, so i am so pleased my Mum could come to stay. We had a relaxed and parsnip-happy time. I also managed a therapeutic cry which though initially exhausting left me feeling much better… good to let it out (thanks mum).

The last few weeks i have been gradually starting to think about Christmas and how to manage it, and as i have continued to feel not so good lately I was feeling a bit daunted by the whole thing. So I thought about ways around it and came up with this. I have sent it to everyone who may consider giving me something.

I am just posting this here as other people with ME may feel the same way about Christmas and seeing that i am doing this may help you think that there are alternatives that might not hurt everyone’s feelings… I have had two responses so far and both were entirely positive, so i still have one family member and one friend talking to me!! phew!

To all my lovely friends and family,

 As most of you are aware, shopping in shops is not something I can do, and last year I did all my Christmas shopping online. I did, however, find it was still a lot handle as I have to limit computer-time and I also find organisation and making decisions about what to get for people quite exhausting when my brain is not working so well. The hardest part though was receiving the deliveries, as I cannot stay out of bed all day nor can I jump up from bed and launch myself down the stairs without risking falling over or at least making myself feel very dizzy and faint. The memory of last year has made me question what to do this year as I have been going through a bad patch and just cannot face it. ***** says that no-one will mind if I just don’t get them anything, but I was not comfortable with this, mostly because when other people start giving me things I will feel so guilty, and it would feel like I have mislead you all: SO, my plan is to a) let you know early so that you have no expectations and hopefully will not have got me anything yet and b) to propose an alternative: 

I would like to propose that instead of giving gifts we just exchange cards. 

If anyone really wants to give me something (please do not feel obligated), I would really like a donation to MERUK (it can be done via my justgiving page (see link below), it is very safe and straightforward to use). This is a potentially very exciting time in the ME-world. A strong link to a retrovirus has been found in the US and the UK charities are keen to fund studies to replicate and expand this research to find out what this could mean in terms of the development of a diagnostic test, a vaccine and even possible treatments in the (hopefully not too distant) future. It would give me enormous hope to feel part of making that happen and would make me just as happy as getting an actual present, if not more so. More info for those who want it is in the links below.

 If you have a favourite charity, please let me know and I will happily make a donation instead of the present I would have bought for you. If you do not make any alternative suggestion then after Christmas I will make a donation to the ME charity using what I would have spent, so if you have another preference, don’t be shy!

 I hope this is ok with everyone, thanks for your understanding,

Ashy xx

 

My Justgiving page for ME Research UK is: http://www.justgiving.com/jfqashy/ To donate you just sign up for a justgiving account if you don’t have one already, then click to donate. It is easy and you can really boost your donation if you are a UK taxpayer by choosing gift aid. 

The Whittemore Peterson Institute in Nevada that made the HMRV discovery: http://www.wpinstitute.org/  (there are links to articles in the media about the discovery and also some good FAQs about ME in general and also about the retrovirus HMRV and what it could mean. 

ME Research UK: www.meresearch.org.uk (And their reaction to HMRV from their homepage: http://www.meresearch.org.uk/information/publications/xmrvfind.html)

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