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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).

I went to the hospital today to see the POTS specialist again. I had a good time! I was a bit worried about how i would feel, and considered ringing them in advance asking them to wheel me from the entrance to the ward, as i had to go alone and it was an early appointment again, but decided i would be ok. They have moved and last time when we went to the new location for the first time i felt very disorientated. This time i had to use a different entrance and it was actually better, though a bit of a walk. I have improved a bit the last couple of days so felt ok to walk a bit.

I was impressed with the hospital entrance which had a shop, cafe, starbucks, hairdresser etc and was really pleasant. I thought i would have an easier life if i lived there as everything was so close together and convenient! I went into the shop on the way out just because i could (i miss shops, not that it had anything i wanted really).

Anyway, so the apppointment: I saw her early as the person before me did not turn up (a “DNA” – i had not heard the term for ages and it took me a few seconds to realise she meant they had not rung to cancel: “Did Not Attend”. I like the term – good for medical appointments!), so she had extra time to spend with me which was good as i had a few things i wanted to talk about.

I told her that apart from the first few weeks this three month period since i saw her last have been pretty hard, probably due to the virus i had which i have not really got over… at least i have not regained the levels of energy or strength i had before that. She asked about my typical day again to identify any peaks and troughs in function to adjust my dosage to help me through the low points. She suggested taking a higher dose first thing, staying the same at lunchtime and re-introducing the late afternoon dose which i am pleased about as i seem to have a big slump late afternoon. So that was the POTS stuff done really, she commiserated me on the virus situation as the same thing happened in the period before i last saw her. Hopefully i can avoid catching any more and maybe experience more of the glimpses of feeling stronger that i have had between these long running lows. There HAVE been times where i have managed to do more, feel better in myself and bounce back quicker, but is it hard to remember them after so many weeks that feel like regression almost to the old days before i even got POTS treatment.

I also wanted to talk to her about my pain and discomfort issues. The last few weeks my muscular pain and tension have been particularly bad. I have had to lie flat on my back a lot more (which i forgot to say) just to rest my upper back as i am having trouble sitting comfortably, even in my one comfy and supportive chair in the house. My skin has been very tender and painful to touch, particularly in areas where my muscles are rock hard underneath. I have been having regular massages which have helped a little bit, but only in a very temporary way. I have also made a bit effort to stretch the worst areas every day, which feels good immediately afterwards and i am sure had helped, but again not dramatically. 

I have also had an increase in skin itching and sensitivity, which may or may not be related to the increase in other pain, as well as more pain/discomfort from my already sensitive bladder, meaning that i feel a continuous feeling of needing a wee, especially in bed when lying on my side or when there is any clothing pressing on my stomach. The itching is also worst in bed and we now only have one sheet i can sleep on that does not cause itching, despite the others feeling quite smooth to the casual touch. She thinks the itching is probably just another symptom of my automonic nervous system not working right. She has previously given me a blood test to investigate the itching so there was nothing else to do really.

She gave me a CK blood test to see if there is anything going on with my muscles. While i do not want this to come back positive (after a quick internet search!), I am so impressed that she takes everything seriously and does not just dismiss it as a typical ME symptom and adopt the “what do i want her to do about it” attitude of most other doctors i have known. I am reassured that if there is something she can check out she will. As usual the taking of the blood was painful, as when a needle is inserted into my veins typically nothing comes out, and today was no different. I warned the nurse before we started and she said today we might be lucky, i said i doubted it. It is like my blood is just sitting there and not going around my body with any force at all, which explains a lot. So it needed to be wiggled and a very sharp pain shot up and down my arm and persisted long after the blood was taken. Ouch! I am used to that though and am not really bothered, though it did make me a bit flushed in the cheeks and lightheaded. She also tested my urine to see if i have any infection but that was negative.

She said there is colleague who does work on muscles that i could see but i can’t remember if that was if the test comes back positive or negative – i am not sure what he can do for me – we moved on quickly to talk about other research she is doing on muscle function and ME and she asked me if i would take part (yes). It involves a muscle biopsy but she says it is pretty much like having blood taken, and seeing as that is usually painful for me i think i will cope with it. Not sure when that will happen. She seemed surprised i am so keen to take part. I am just enthusiastic to do anything i can to help with much needed research and it is good to feel i am doing something worthwhile with what limited energies i have. It is something i CAN do. Plus i like going there, it may seem sad but it often feels like a social occasion. I have known them for over a year and seen them as often as any real life friends this year! They are friendly and take time to chat. It is nice to have some social contact and be out and about.

I have made an appointment with an osteopath for Tuesday as i really need to try something new with my upper back problems in particular, although they don’t just treat backs. I am hoping to also get advice about stretching my problem areas, even strengthening them perhaps, or am i getting carried away here? Also i wonder if my pillow is the right one for me (i am constantly fighting with it to get it fluffed up to the right depth) and if he can advise me on sleeping arrangements, seeing as i spend so much time in bed. It may be making my shoulders more painful if lying on my side is putting too much pressure on them, and it has been too painful to lie on my side much lately, but i do prefer it so maybe a higher pillow (tempur?) would be helpful, but i don’t want to spend a fortune on a fancy pillow then it be no help.

My partner is away for the next few days (though she seems to be coming down with something this evening so we will see what the morning brings – virus alert!). It is the last planned trip she has this year except one overnight trip which should be ok. I am really pleased about that as i don’t think these periods of self-care have been kind to me when i am already struggling. The compound effect of several days alone can really have a big impact on me and take some getting over. Apart from the Osteopath appointment i have nothing much happening while she is away, and i am feeling ok about it now that my pain levels are gradually improving. Maybe in a few weeks i can actually have some spare energy to do some of the creative things i have on my list, as recently i have been just doing the bare minimum in daily tasks and i am getting a bit frustrated. Where is the fun? Where is the creative sparkle that makes life worth living? I have been limited even in computer time, tv time and reading abilities… this blog post may be a sign things are improving! Woman can not live on stretching and resting alone.

ME/CFS Awareness

ME/CFS Awareness


December 2020