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This may seem like a silly question, of course i am very happy and excited to be having some much better days, but i do have mixed feelings…
I also know that i am getting very ahead of myself in writing this at all as it is only a week or so that i have had this real buzz, and hardly all day everyday… it could be just a post-holiday buzz? It does come on the back of gradual improvements over the last few weeks/months and my change to a higher dose of Midodrine a couple of weeks ago though, so maybe it may be here to stay???
Firstly let me explain. I went to Scarborough for my holiday, i got back on Sunday (a week ago). I rested for three days and did not feel too great initially, but by Thursday i felt up to going to see a friend and her baby. I went by taxi both ways as it would be a bus and then a bit of a walk otherwise, and i wanted to save energy for the visit and not overdo it so soon after the holiday. I was there about two and a half hours, mostly lying on her sofa but chatting and playing/interacting with her son. I also had my favourite taxi driver both ways and we did a lot of talking on the journeys, so it was quite an extended time of activity. I had a great time, and although i was exhausted afterwards i only had one rest day, then went out again yesterday!
So yesterday i went with my partner to the garden centre. They have a wheelchair available and we have used it before, but as i only wanted to look at plants and felt pretty good, we did not bother. I sat down a couple of times but felt fine, and we were there quite a while in the end. I was desperate for the toilet by the end and they didn’t seem to have one, so we stopped by a pub along the road and sat outside for a quick cuppa and to use the facilities. Then we went to Tesco and i went into the health food shop which is near the entrance and got a few things, then we went home. All in all this was a lot of walking about and i had felt good and really enjoyed it. We got some beautiful plants to cheer up the backyard, a couple for the front garden and two freebies as well!
When we got home i felt a bit less ok, so lunch was made for me and i had a lie down. However i could not sleep as too excited and after a doze i got up again and we did some potting up type activity (i was mostly instructing but still active). Then in the evening we sat outside and had a BBQ in the yard, admiring the new plants in the sunshine.
We stayed out until 8pm playing cards and chatting and it was really good. I was amazed at my stamina as it had been a long day but i was buzzing with happiness and excitement about feeling so good, just as i was on my last day in Scarborough. The Red Arrows flew by and did an amazing stunt right where we could see it, a tight and high loop in the sky, in formation, with them all plummeting earthwards together, then fanning and levelling out at the last minute – leaving a big smokey loop in the sky… it was very dramatic and we were so pleased to have seen it as it was over in a flash.
I was tired by the time we went inside but very happy. One possible warning sign of overdoing it is that i have had a lot more of a symptom i have had on and off before, which i know a lot of people with ME do get. It is like a shiver or a twitch when you are not cold. It is quite a big shiver and i have been getting it in the muscles of my shoulders and my whole upper body shakes spontaneously, particularly in the evenings when i am tired. On the up side, my muscular pain and tension has been a lot better in that area this week (since my holiday massage and such) and the shiver is painless and feels a bit like a releasing of tension, so i am not too bothered. Heat seems to help relieve it. I think it is a neurological/nerve type symptom. Maybe it is like mini electric shocks, as it does feel a bit like a TENS machine induced spasm, caused by or linked to my new extra excitable brain activity!?! I met a woman who had it very badly at a support group for ME and she would involuntarily suck in her breath when she had the shiver and it made a lot of noise due to that and was quite distracting during conversation… another unexplained ME oddity!
So it’s all good. Today i have slept more than usual and only done a bit of emailing and writing this, but have not felt too bad. These things, if i managed them at all (and certainly not in such quick succession) would take days or weeks to recover from a few months ago.
So why am i feeling a bit strange about all this? I really don’t know how to explain it…
Firstly i have a feeling that i am somehow cheating someone or something, that this is not my reality, my life, my lot. This feeling is quite worrying, but it is no wonder i just expect to feel awful all the time, i suppose, based on the last few years. It is a survival strategy not to expect anything to change. I think also i have to spend so much time explaining what i can’t do for benefits reasons and to people who share my life or new people i meet, that when things change it is as if i have been lying… hmm that sounds ridiculous doesn’t it? Change is always an adjustment…
Maybe i feel bad because i am getting Midodrine for my POTS (the very likely main reason for me feeling better) which is unavailable to everyone else and i know they may read this and it is always hard to read that other people are improving when you are not, usually i am the one who is not, but when will their turn come?
Also, I think it just feels a bit surreal to me, very unreal, and perhaps i cannot trust it to last or continue to improve… maybe i am coming around to that dangerous concept of Hope again! I cannot help but let my mind get carried away with itself; from dreaming of day trips and socialising, to doing courses, travelling places… and all the things that may become possible if things improve even more! (hmm better stop that!) I am already almost expecting August to be great… very dangerous territory…
It is mostly the euphoria i am feeling that feels strange. I am getting very high and excited (is better circulation to my brain allowing such feelings?) about quite simple things… most people do not get overly excited and “high” about a short wander to the beach, or a trip to the garden centre on a sunny day, do they? I wonder if it is just because it is so amazing to be able to go and even more amazing/unusual to feel good while doing these things, rather than just surviving them? If so, will the excitement fade if it becomes more everyday and normal to feel this good? (I hope not.) I am not getting any low mood as a come down, but i almost feel like i am on drugs at these times! Is it just my brain chemicals playing up? Was i depressed before but did not know it?
Anyway, I am trying to just take each day at a time, not to overdo it and rest up in between things. Importantly i must remember how bad i still feel regularly, how my life is set up based on me being barely able to look after myself/do much and if i reintroduced all the self care and household tasks that i do not do, i would not feel so positive; that what i am able to do is a big improvement for me but still very low level for most and I should not get carried away on the very odd but FUN tide of euphoria and just see what happens…
(but who can blame me?!!)
Well, this week has not been good. I have not been really bad, but not well enough to do anything much for long. Some days have been as bad as ever, seeing a return of bad upper back pain and regular headaches among other things. I have had to sleep a lot and have just not felt much sparkle…
Yesterday i went to see the CFS specialist again. He suggested it may be the medication causing this down-turn as he says it is generally not well tolerated (The POTS specialist did not say this to me, who is right?). Up til then i was thinking maybe i was fighting the nasty virus my partner has had all week, but i take his point. Maybe i just didn’t want it to be that, but thinking about it, it makes sense. I have had more problems with temperature regulation again, including goosebumps when warm (particularly on my thighs) and cold feelings on my head when my body is warm. Also a difficulty getting warm, followed suddenly by being over-hot and sweating. Goosebumps is meant to be a side effect, paricularly on the scalp so it kind of follows.
I am going to give it another couple of weeks to see if things improve as my body gets used to the new dosage as it was three weeks before i was sure it was having a positive effect intially. If no better i will ring the hospital and see what they suggest. After the initial success, i don’t want to give up on midodrine too early.
Although i am not hideously ill, i feel pretty much as i have pre-medication which is disappointing. What seemed “normal” has now become “worse than expected” , as i got my hopes up, which is not a good way to see it mood-wise. But i am well practiced with patience and i am trying to just see what happens. I really want to go to a lecture on monday evening that the POTS specialist is giving, and it is my birthday during the week so would like to be able to do something outside the house next weekend to mark the occasion. What we attempt will depend how this week goes… my short-list is:
- Lunch/afternoon tea at a fancy hotel/country mansion type place up the road (easy ten mins drive for my partner) where i have not been before
- Go into town to the arts cinema, with optional meal out afterwards if stamina allows
- Go to National Glass Centre in Sunderland – this is a very long shot and the meds would have to kick in big-time as it is quite a drive and would need to be pushed in wheelchair etc etc – but no point ruling it out til the time comes as I have wanted to go there for years and have never been. There is a really interesting-looking exhibition on called Beautifully Crafted (see above link).
- Also in Sunderland are the Winter Gardens, which again i have not been to, but i could never do both things at once… it is winter though so must be a good time to visit
Or i may have other inspiration in the week, who knows! I hope i can do something anyway… If not i could become old AND grumpy overnight!
Also, to throw a spanner in the works, my partner has been ill with a virus all week and is still not tip-top, so it will depend on how she is doing by then as well… fingers crossed… again!
Today i went to see the POTS Specialist again. She was pleased to hear that i have been feeling better and said it has made her New Year! I said that it had certainly made mine 
They did not do the tests again so i don’t know if my heart is racing a little slower or not these days. She said it was too early to see much of a difference but they would repeat the tests again in a while.
She has doubled my dosage of Midodrine as i was on a very small dose. I now will take 5mg twice a day, morning and lunchtime. She said she hopes i will see twice the improvement! I like her enthusiasm and her positive attitude. She does not make wild promises but at the same time is optimistic and so enthusiastic about helping me.
I took the first “double dose” at lunch time and my hair went all tingly and i felt a bit shivery like goosebumps when i went for a lie down a bit later. This is the only side effect i had when i started taking the tablets 6 weeks ago and it soon passed. It is not unpleasant, quite amusing really as side-effects go!
I asked her if there was anything else i could be doing, such as leg exercises, as i had read that keeping legs toned was helpful and mine are obviously not in great shape after years of illness and limited activity. She said NO, quite strongly. She said it took years to get into this state (!) and that it will take years to get out of it and that I am not to push it or go “running marathons”… er, well that was not what i was thinking but point taken, doc! So gently does it…
I also asked if i will always be on this drug. She said that maybe i would be but that hopefully with taking the medication and increasing my activity the POTS will improve too. She said i will keep going to see her and she may adjust the dosages as we go along as required, then after a year she will assess if we can reduce the dosage or if we need to continue for longer.
This is promising as i was thinking i would maybe be stuck on it forever. The thought of it actually getting better and not needing any medication one day is beyond my wildest dreams, having only just got a diagnosis and treatment 6 weeks ago!
I am really starting to dare to hope that i can eventually return to the levels of health i had about 3 years ago, when i was working 20 hours per week. (This is a world away from where i am now, however, so it won’t happen overnight). I am certain my POTS symptoms began at this time, although they only became serious gradually about 2 years ago. The last year they have been getting noticeably more and more debilitating and have limited every activity and caused so many of my symptoms. It will be so interesting to see which symptoms are persistent once the POTS symptoms are managed/reduced. I am getting ahead of myself though…
I am getting out and about more and coping well. I still have to sit down and can feel the symptoms if i stand still for even a minute but am learning to read when it is ok to continue and when it is not! I was so happy today after seeing the specialist, as instead of getting a taxi home, i walked down the hill to a chinese supermarket that i used to love popping into and have not managed to visit for at least 3 years. I bought a few things and then bought some fruit and veg from a stall by the bus station and got the bus home! I didn’t feel ill on the bus and felt ok standing to pay in the shop as well. It is such as small thing for a healthy person to walk about for half an hour and get the bus but such a novelty to have the freedom to do that rather than get a taxi home and collapse. I saved £7 by getting the bus, so most of my shopping was free! I did still have a well earned nap this afternoon, of course! I had to stop myself buying everything just for the novelty value as i still can’t carry much without getting aches and pains afterwards.
Yesterday i went ten minutes on the bus to some shops nearby and got a few things and had lunch out, and got the bus back home, and tomorrow or sunday i am planning to go to an art gallery in town with my partner. I will use their wheelchair as i want to relax, take my time and be able to see things that don’t have a chair nearby, but to go out so often in quick succession is something i could not have contemplated 2 months ago.
I am still not walking the dog but hope to build up to doing it on days where nothing else is happening, which will be nice, as i have really missed the fresh air and nature fix that i got on good days where i could go for 20 minutes or so. Also the opportunity to take my camera and record anything beautiful i see. I have not missed the way things had become where i was out for 5-10 minutes and felt like death, sat on a bench across the road and worried that i would not make it back to the door and had to lie down for a long time afterwards to recover. Hopefully i won’t have too many of those days again.
All this hope of improvement comes just weeks before my DLA tribunal, although i may well still qualify for something it has thrown me into a quandry about whether to go or not. I do not want to get ahead of myself in my enthusiasm for change and i am not sure what i can and can’t do on a regular basis as it has only been a few weeks and i have had bad days, of course, among the good. I think i am not in line for higher rate mobilty now, as it was always borderline and i feel more able to get about short distances and more predictably, although i have not really tested it on a regular basis and have only been out when i felt at my best time of day. The lower rate care therefore is all that is left and i think this is probably out as well. It is a shame that i almost definately qualified for that until a few weeks ago, so all that back pay is lost as i am improving at the last minute! I don’t really care any more though, i am just pleased not to feel so vulnerable that i cannot look after myself properly. I am sure i will still need help with cooking sometimes and having my hair washed and other bits and bobs, but i am unsure if it is enough for DLA… I just hope i can improve enough to leave all of that behind… I will just talk to my benefits advisor people and see what they say. On the one hand there is no harm in attending the tribunal and letting them make the decision, after all i have been through to get to this point, but on the other hand i just don’t want to go through it if there is no point. I want to look to the future.
Yesterday, i went to see the POTS specialist! It was a positive experience, and although i have realised that i have been pinning a lot of hopes on her and her potential treatments for me, i have not lost that hope since speaking to her. It is the first time anyone has really tried to help me with medication (except painkillers/antidepressants which the majority of people will take at some time), which is the way many illnesses are treated and managed, but to someone with CFS/ME it feels very novel.
She said to me that half of those with POTS experience ME-like symptoms of weakness, fatigue etc and about 27% of people she sees with ME have POTS. I said “oh i am one of the lucky ones to have both” in a sarky way, and she said “well yes in a way you are as it means we can offer your some medication to help manage it.” So if they are not completely distinct entities, it could be said that i have the type of ME that lends itslef to POTS and that there are things that can be tried to improve my quality of life… although my first thought was that she was putting a very positive spin on the fact that as i have both it is a sign that my illness is on the more severe side of the spectrum in the first place! Take your pick!
I had similar tests to those i had before and again my blood pressure was low and my heart rate was very high on standing – it was 152 beats per minute at one point! They always ask me how i feel when this is happening, and it is quite funny, as i feel ok, just a little lightheaded but it is so normal to me now that i think i have forgotten what it feels like to stand normally. I tell them i feel ok, and they look very doubtful! They only make me stand there for two minutes, i think any longer and i would struggle as i do notice i am swaying more as time goes on and my lower legs tingle and feel heavy.
So they did the tests, and then i spoke to the specialist who is really nice (as is everyone in the unit, it seems). She has given me Midodrine, a Vasoconstrictor, at a low dose to start with. I have taken one yesterday and one this morning and so far, no bad reaction! There are not meant to be many bad side effects, especially on a low dose, but i know i am quite sensitive to drugs so i am always worried about side effects. The ones to look out for are all things i experience anyway, so it may not be obvious unless a big reaction. The doctor says that minor side effects should be temporary anyway. Also it is good as i can still take the painkillers and sleeping tablets that i sometimes take as they don’t affect each other… result!
Although this drug is obviously quite a serious drug, and is recommended long term only if it has a marked improvement for people whose quality of life has been greatly reduced by POTS, i feel that it will be so worth it if it helps me. My quality of life in terms of being able to care for myself and get out and about has been so much reduced over the last three years and has felt like a steady decline, that any turn around in that trend is worth some long term risks. I feel lucky that unlike many chronically ill and disabled people i have not had to pollute my body with drugs just to stay alive, or get through each day, regardless of the side effects and the impact that may have later (and i have a prospect of “later”). Because ME is not (seen as) a terminal illness, at least, most people live with it, even severely, for decades; there is always a feeling that we want to preserve what we have got, health-wise and not jeopardise the future by taking risks now, in case we get that miraculous recovery and because we don’t know how long we will have to endure this if we don’t. But it gets to a point where the implications of living such a limited life are also so “dangerous” on many levels that any drug that can help is welcome. That is how i feel now. Not that this one seems particularly risky but it makes me think of these issues. The prospect of taking a drug every day for the forseeable future is strange for me. I only started taking the contraceptive pill recently and that was enough of a decision, although i am so pleased i am on it now. I realise this is a priviledged position, but it also comes from the fact that there are no drug treatments like this for ME.
It is interesting to compare the way i have been diagnosed and treated for two conditions that are very similar in cause (often viral, but may be other factors) and which affect very similar bodily functions (autonomic nervous system). No psychologist assessments so far for POTS! Just go in, have a test, and take some tablets!
It seems that many of my worst symptoms could be attributed to POTS, so there is great potential for improvement, if we can find a drug which works for me…
Top of my list would be: ability to stand up for more than a few seconds/minutes which is variable and unpredictable, ability to walk for more than a few minutes without making myself feel very ill for hours or being worried if i can make it back to the front door/taxi, not having hot flushes many times a day, not having blurred vision, not having such constant pain and tension in neck and shoulders and also bad headaches practically every day… there are many others but that would be a start and don’t want to ask for the moon on a stick… so no pressure then doc?!?
Interesting what she said about pain, as she said i may have trigger points (this is known as myofascial pain, and is what people with fibromyalgia typically have, and many people with ME have it to some extent as well. I have just bought a book about it, The Trigger Point Therapy Workbook, so i hope to work on my trigger points soon as well, once i have found the energy to find them and understand the book!), but she said that there is a pattern of pain associated with POTS which she called “coathanger pain” which is pain across mid back, shoulders, up the neck into the head… this is my exact pain pattern! She says it is caused by the muscles being starved of oxygen as blood flow in upper body is limited by POTS and the larger muscles show most distress. No wonder my brain hurts!! ha ha.
So my brain is literally hurting now and i am sure there is more to say about POTS but it will have to wait. All i will say to close is that i had no idea how much the themes of my first blog post on Hope and Acceptance would be so much the themes of the whole blog, it seems it always comes back to this for me. Now i have some Hope again (the most i have had since early on in the illness when they were still telling me i could recover and i still half belived them) and it is very dangerous territory… but maybe i am becoming more experienced in coping when hopes are dashed? i “hope” so!!!!
Well it is one week since i started taking my energy revitalisation vitamin power stuff, along with CoQ10, L-Carnetine, B-vitamins etc and over a week since i started to take D-Ribose, all as recommended in the book From Fatigued to Fantastic!
Although you are not supposed to feel any better so quickly i am a bit disappointed to have missed out on the two day high reported by Rachel!
I have had the odd moment of feeling good this last week, although not like real “lift off”, just happiness to have a whole day without head pains and so on… although i have had them most days and also bad heaviness/aching in my legs and back & arm pains that feel muscular and it’s a bit worse than usual… so if the d-ribose helps with muscular recovery then what is causing that? (I think tension caused by going to CBT and thinking about it too much may be partly to blame for the muscular aches - my thighs must tense when i am stressed as often they shake/tremble/ache after i speak to people intensely… wierd!). Walking the dog for even 10 minutes has felt almost impossible most days and i have shuffled to the nearest bench, told her to “get on with it” and had trouble getting up again. So maybe next week if these symptoms ease i will be able to see it as “proof” something is having an effect!
I am not too downhearted about it, it’s early days and i am not expecting miracles, but i am hoping i find my tasks this week is a bit easier to complete… fingers crossed!
Well, this is my first post… on my first blog… it is also my first day of taking D-Ribose…
A friend of mine bought me a book called “From Fatigued to Fantastic” by Dr Teitlebaum and she has been taking it for 3 weeks so far (see her blog: http://chronicallyme.wordpress.com/. I had heard of D-Ribose before, in Dr Sarah Myhill’s CFS/ME book: http://www.drmyhill.co.uk/articles.cfm?subject=Fatigue and thought what do i have to lose?
I have been so full of despair in recent weeks but after reading the book i do feel a sense of Hope returning, and am pleased to be doing something constructive… although it is mixed with the feeling that i will not be able to fully try everything in the book (which is american) as a whole section is about hormones and taking hormonal supplements and getting certain tests done, which i doubt i can get via the NHS, and i don’t want to mess about with that kind of stuff unsupervised… I am hopefully going to see a hormone specialist soon as I have noticed quite dramatic fluctuations in my symptoms based on my monthly cycle recently and my doc did not know what to do about it, so maybe i can talk to the specialist about the book and it’s contents then… finger’s crossed they are open minded.
I have ordered lots of expensive nutritional supplements, including the D-ribose so that is a good start. I will be happy to get even a small improvement in quality of life as recently my life has become very small & to get further than ten minutes from my house by foot or car is a rare and amazing event. I have been really struggling to get through each day. Things have seemed to be just getting slowly worse and worse and i would really like to see a change in direction!
I feel i have been living without much Hope recently and i am unsure if that has been good for me. I can’t help but have a bit of an antagonistic relationship with hope these days: it seems at odds with Acceptance somehow.
Up until i became too ill to work again i felt i was on a very slow path to recovery as i had never properly relapsed like others seemed to; once i did i had to face the fact that after having this illness for 7 years there was a chance that i would always have it.
It seems obvious, but up until this point (when i asked my specialist straight out how many people who had been ill this long got fully better again and he said something along the lines of “not many – you will probably always be affected by it but may improve a bit”) all medical and other people had said to me that “most people get better”. In fact only about 10% of people with ME totally recover i read recently, many others improve to a good level of functionning but not to previous levels of health and about 20% stay seriously disabled, or even decline in health. (this is just from memory so don’t quote me!).
Why do medical professionals continuously say i will get better? Do they think i need to believe that and need to keep Hope? (This is especially galling when they only offer “Lifestyle Management” and don’t seem open to even trying certain tests or treatments which could help). After 9 years some of them still say it. It is the easy thing to say, but i feel it is also important to accept my life for what it is and not be waiting to be well to live it. I try to live it as well as i can within my limits, as i don’t know how i will be tomorrow or next year. Things could get (and have got) worse!
So, i had never given up on Hope completely as i want to be well with all by heart and soul, but maybe my hopes are smaller now. I just want to be able to get out of the house a bit more, be able to socialise more, be able to cope with short drives and be able to visit friends and family on the train occasionally… These things when i read them don’t seem small at all but they would be nice, wouldn’t they?
Dr T – i hope you know what you are talking about… you got my hopes up and i don’t need them dashed again…
