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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…
Now, i don’t want to jinx it or anything but i have not had a virus so far this year. Last year i had several and even in between them i felt less well than what i considered to be normal. Early this year i did start to take some new supplements as i had a closer look at my multi-vitamins and minerals and they were a bit short on things that seemed important to me. So i have been taking (sublingual) Zinc and more Vitamin C. Also i am taking Iron as although in the normal range my iron tests always seem to come out “a bit low” so i thought why not top it up to be more average and see if i feel better? My Ferritin was 17 and after an internet search that seems ok, but not high, so i thought it would be ok to take some iron for a while as a short-term booster. Also i have been taking Calcium and Magnesium tablets (50/50 ratio) and since December last year i have been taking B12 and also Vitamin D (which i read yesterday has been shown in a study to help with reducing the number of viruses caught by some school children but more research needs to be done to prove this, as usual – http://www.timesonline.co.uk/tol/news/uk/scotland/article7061778.ece).
Have these things helped me or is it just luck that i have not caught anything yet? I do feel a bit different, i hesitate to say “better” as there are so many things going on in my body but i had this feeling of fighting something constantly last year and that feeling has gone. Yes, actually i do feel a little better.
On a vaguely related note i have stopped making Kefir. Actually i chucked it all out in a rebellious fit after new year sometime. Probably a waste but it was just so gross, i have always hated milky stuff and although i did enjoy it most days when i made it with soya milk, i had had enough. I don’t feel any different digestively or otherwise… It may have helped me. I cannot tell.
I just got home from my appointment. I go every three months and it is now over a year since i started to see her. This time i saw another doctor who works with her, though she was there and he went to talk to her about me at one point. This new doctor was really very nice and talked to me at length about how things have been and what my current main problems are. I told him that my itching has been very bad, though i have found a way to make it manageable it is certainly not a cure. He has made me a dermatology referral! I don’t hold out much hope of getting help with it or understanding it but i am very happy to have a referral after having had this problem on and off since i was 13!! (That’s twenty years or so). I hope that the dermatologist will be open minded and as keen to help as the POTS unit are… we shall see.
I also explained that i had only felt a very minor effect of the increased dosage of Midodrine due to all the other symptoms i have been having, particularly the viruses which have felt fairly constant in their impact. He decided to keep the dosage at the same level this time so as not to increase it too quickly and also in case the medication is contributing to the increased itching i think.
I told him that i had seen my GP about my lymph nodes in my groin area (though they seem a bit better now) and he felt my neck and underarms (said they seem fine) and took more blood to check. It is nice that they are so thorough. He also took blood to check my kidney function, not sure specifically why but it’s good to feel that they take things so seriously.
All in all it was a good visit, if a little intense, energy-wise. I managed to get my favourite taxi driver to take me there, and although he was not available for the return journey the man who came was also very nice. Even better, i met a nice family in the waiting room who had travelled quite a long way and were making their first visit to see the specialist. The daughter has ME and POTS like me and I spoke to them for a while and swapped emails etc so i hope we have some more contact. All that talking and effort expended has left me slightly buzzing (which is why i am foolishly writing this now, but i will rest when i am done) so i expect a (hopefully) mini crash over the next few days…
Although there is nothing to be done about how hard things have been recently, i really needed some positive feeling to come out of today. I feel that i was listened to and taken seriously as always there, which is all i can hope for in the short term and it is more than many people get! I feel good and cheered by my trip out of the house, and the social interaction was a real bonus.
Well, it has been about a month since i went for the big day out to the art gallery etc, and i have been feeling pretty jaded since. I keep waiting to pick up again, but think the big day out (technically speaking – half day!) so soon after the virus (which had not completely gone) was maybe an error, not that i would do it differently if i had the chance again. I have just not regained my previous energy levels. Last week i had to cancel my hair cut and although i made it this week (after resting as much as possible all week) it was a real struggle to be up and functional for the 3.30pm appointment. I really wanted to get out of the house, but was not really well enough. I have felt worse at such occasions but it felt like an endurance test to sit there and listen to the chit chat for an hour. I was so pleased not to be home alone when i got back as i felt pretty dodgy… my IBS has also been flaring up despite my diet being plain and predictable – i suppose just not being so well means it plays up, but that makes me feel worse too.
A friend of mine had invited me to join her in Scarborough this coming weekend. For the last couple of weeks i have been feeling far too ill to go but really trying hard to recoup some energy in the hope that i could miraculously pull myself together in time. Yesterday’s hair cut experience has made me decide not to go. Although it is certainly what i need mentally/emotionally, my body is just not up to it. It is so hard to accept that after having such a successful trip last time. Just sometimes it would be nice to have a fixed condition and be able to say “yes i can do X” or “No i can’t do X”: to be able to plan ahead and know the score…
Also my nose is running today after a few sneezy days and i am concerned that i am getting another cold! I am doing my nasal washing fastidiously in the hope that no germs will colonise… i don’t think i have recovered from the last one yet 😦
On the up side, being at home this weekend means i may be able to see a friend who i don’t get to see enough, she has invited me over for risotto, so i hope i will be up to it! I will be home alone Thursday – Tuesday, so will be using my energy on essential tasks again, so a fun but relaxed evening with good company will be good to break up the time.
I did get two presents in the post this week, which was really lovely and a big surprise! Sometimes things happen just when you need them and sometimes they don’t – i am grateful for the things that do…
The friend who was going to Scarborough decided not to go this weekend if i am not, so maybe we can rearrange it if i perk up again… finger’s crossed eh?
Well, yes. I had a great week with my friend who came to stay. My partner was at home most days too and although we all felt a bit dodgy at various times for various reasons we managed to go out and about a little bit, but mostly just spent quality time together. I was beaten two games out of three at scrabble, we ate lots of Wensleydale (it’s a regional UK cheese for those not in the UK), sat in the sunshine (it was a cloudy week overall but we seized any chance we got!) and had lots of hugs. The biggest thing we did was a picnic in a park where there were us three, plus four other people!! A veritable party in the park!
The downside is that as soon as she left i got a sore throat and a runny nose… this is the third cold i have had this spring/summer and i am not enjoying them! Last year i only had one cold (in winter, which seems only right) and it had been a while since i had had one even then. I used to say that i didn’t get them; that my immune system seemed to fight them off. I used to feel worse than usual for a week or so, but not get proper symptoms, just a hint but it would never fully develop. Of course i used to moan about this and say it would be better if it just came out like normal, as then at least i could say i had a cold and have a reason for feeling so bad – i am now eating my words as having a proper one is definitely worse. It is amazing how annoying inflamed nasal passages can be: My nose has turned reptilian and scaly; my eyes have been streaming from the itchiness leading them to be puffy and small (piggy); and sleeping has been very difficult.
Having said that, i think i have turned a corner today. It is only day four and i do feel a bit better. I slept ok, I have not used quite so many tissues AND i have mostly been able to breathe. Some of that though is thanks to my Sinucleanse thingy, which i ordered online yesterday lunchtime and which came today (!). It is a plastic bottle and it comes with salty stuff that you dissolve in warm water, then insert the nozzle up one nostril and squeeze water into it – guess what? It comes out the other nostril!!! Quite funny actually. After some washing you blow your nose (quite a lot of snot came out the first time!) then repeat on the other side. I bought it because a friend recommended a “Neti Pot” last time i got a cold, which is like a gravy boat for the nose, but the same principal! It is supposed to wash out allergens, viruses etc and reduce the number of viruses you get and the duration they last for – i am all for that, so am giving it a go. I am already feeling the benefit.
(By the way, i also recommend Boots catarrh pastilles for blocked nose, and chestiness too… they are small and innocent looking, but really are the business! Suck ’em and see!)
Maybe my immune system behaving differently is a sign of change? This theory has been mooted… no sign of imminent ME remission but i will let you know!! Funny though, that apart from the worst day yesterday where i was seriously suffering with symptoms and lack of sleep, i do feel a bit different when i have these viruses. Maybe it is because i expect to feel like someone with ME and a virus on top, so have low expectations, or maybe because i do less due to having a virus but my energy levels do not seem to be significantly lower, in fact, i would say they have been about the same but more consistent through the day; less major slumps and sleepiness and maybe more stamina at a steady level… could be adrenaline-type reaction caused by “having to get through this cold”, or the irritation of symptoms, or maybe i am just imagining it… or maybe there is an immune component to my symptoms even after all these years?
Anyway, i am feeling like this cold will be over in a couple of days and i am just grateful that i have not (yet!) had the frequent nosebleeds of last time which literally drained me of all life-force! By the way, i recommend you read this about how to stop nosebleeds if you are likely to get in that situation – i found it after my worst one and think it may not have lasted so long and been so traumatic had i known about this before! It is hard to search online when blood is pouring out of you, so click now!
After reading Rachel’s post on D-Ribose, i decided to stop taking it for three weeks to see what happens. That was a week ago. Unfortunately i have had a cold virus for the last week and been feeling less than great, although not really much worse energy-wise, just enduring some nasty symptoms and sleeping at odd times as my sore throat and coughing kept me awake at night. Anyway i don’t think there has been any effect so far of stopping the D-Ribose.
I have been taking it for a quite a long time now. I have blogged about it before, in fact, from the first post of this blog! https://ashy00.wordpress.com/2008/05/08/hello-world/
I have had short breaks from it before, where i have usually felt more aches, particularly in the thigh area. I used to have a lot of heaviness in my legs and thigh aching, and although this year has been pretty bad ME-wise (or is it POTS-wise?!), this is one symptoms that has been a lot better in general (unless i actually use those muscles). Interestingly I think my mood has been better this year as well (except when going through DLA and other dramas which has lead to low moods, frustration, stress and exhaustion, but i have had less what i would term “proper” depression where i could not see the reason). I think i was particularly depressed in the period before starting the blog last year, and this did seem to improve dramatically at the time i started the D-Ribose (or was it blogging? Or was it the sunshine and spring! Who knows!). So i will be keeping an eye on that also… I feel fine right now mood wise so that’s a good start.
The reason i am only doing it for three weeks, then plan to start taking it again, is that i think the effects will be be delayed and i need it to be working for me again in six weeks or so as my sister is getting married, which will involve me travelling and overdoing myself in various ways, so i need all the functionality i can get!
So we will see if there is any noticeable change from not taking it for three weeks… it is hard to judge the impact energy-wise. I did not feel much improvement on that level for quite a while after starting to take it, and i hardly have much stamina in general, so it may not have much to do with it…
Another reason i am stopping it, is that some people find it upsets their digestive system and mine has been really playing up recently, which has made me feel really weak and lacklustre. If it is getting worse, the D-Ribose may not be helping… Interestingly it seems to have been a bit better the last week, while i had my virus. Either the virus caused the bad flare up beforehand (although it has been pretty bad for a while now, that week was really unpleasant), or my body likes a high sugar diet of cough mixture, throat losengers etc! I was getting really sick of feeling all sugary by the end of it and am so glad to be feeling better! Sure my teeth are also pleased…
So, i will see what happens in these three weeks and in the weeks after re-starting it, and see what i want to do in future, based on that. I don’t want to take stuff when there is little point, there is always some impact (financial or health-wise) and the gout association with D-Ribose highlighted by Rachel is not good, i am told it is in my Mum’s family and it sounds nasty!
It is so hard to know whether a supplement is helping or not when symptoms come and go and levels of health fluctuate hour to hour anyway… it is also easy to get stuck taking something, as it is never a good time to risk feeling worse by stopping it! Will i be any the wiser after my experiments? We shall see…