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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?!!)
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.
Well, Happy New Year to everyone reading my blog!
It is about time i posted an update about how things have been going… thing is, i have been so busy! Yes, it is time to be definite about the new the new tablets for POTS… they are doing some good, for sure!
Symptoms improved include:
Firstly and importantly, i have not had to lie down in a public place, near collapse, due to a POTS “episode” (where my heart is beating very very fast, i am melting with heat radiating from me, feeling very dizzy, weak and ill wondering how i will get home), which is very welcome! I suppose this means my heart is not beating as fast anymore… although it still seems to race sometimes… we will see what the machines say at the hospital when they test me on Friday!
Headaches and muscular tension in upper back, neck, shoulders and head – still there but less pain and headaches less frequent.
Blurred Vision – seems a lot better – amazing what a bit of blood to the eyes can do 
Temperature control (less hot flushes and icy feet – although my new sheepskin slippers may also be having an effect there!)
Walking speed (short distances obviously!) and ability/speed to get up from sitting both often better.
Recovery period – i have been recovering more quickly than i would expect from such “big” things.
I am feeling better in myself, especially in the mornings and can usually wait til later for my nap if i need to.
I often have more stamina for talking to people, going out, being online or reading etc.
Things i am not sure if improved yet:
Distance i can walk and time i can stand up for: I have done a bit more of these to test them out but do soon reach my limits… have had a couple of good experiences where i felt it was a lot better but in general it is not a lot better so the jury is out on that… i am not getting to the point of collapse as quickly (see “episodes” above).
Things i have been doing over Christmas and New Year…
Travelled for seven hours door to door to stay with my Mum: this was a trauma and i NEVER want to see a train again, the wheelchair assistance helped (once it arrived) and if i had not missed my connection the journey would have been a bit easier… however, although i rested up, i did not feel as bad in the following days as i expected so i was very happy about that.
I stayed at my Mum’s house for a week and spent time with my sister, her boyfriend, my uncle, grandparents, dad and other people that came around and in general felt ok to chat and join in. It was nice to be so sociable!
I went out for lunch with my uncle, mum and sister.
I went into Marks and Spencer Simply Food (my sister drove me to the door and then took me home!) and i enjoyed browsing all the lovely things in there – i had no idea all the nice things they have!
A friend of mine drove me back home in her VW camper van, then stayed for a couple of nights to see in the New Year with us. The journey was lovely, sunny and frosty and so much more relaxed than the train. The seat in the camper van was really comfy and had arm rests and tilted back so that i could doze as well!
On New Year’s Eve we drove to the coast to a lighthouse and i walked a little way and looked in some rock pools, but saw not one crab! Once i went there years ago and there were hundreds so i was a little disappointed… the seaweed etc was beautiful though. We then went to a pub for lunch on the way home! We were out for 3 hours! I then had a sleep and stayed up til 1am to see in 2009 with card games and shortbread biscuits… needless to say i slept nearly all of new year’s day, but happily enough as there was a good reason for it.
Since then i have walked the dog once, a short distance but it was not too hard. I have been out for a couple of hours in the evening to a social meeting of creative people, AND been back to an M&S food shop
Today my main task is to write this, have a bath and not much else as i don’t want to over do it too much and my headaches have been returning a little… all in all though it was been a really encouraging start to the year and although i still have just about all the POTS symptoms i had before they are less distressing and not as bad as they were. I am hoping when i go back to the hospital on Friday we can build on this good start and that this will not be it, as although it is a huge improvement from where i was before, and i am very grateful, i would like a bit more, please! (call me Oliver!)
I do not expect miracles, but have been operating at such a low level over the last couple of years that it would take several hundred percent’s increase to get back to where i could do certain things with any reliabilty, such as drive places and be able to stay there a while/walk a little then be sure to feel safe driving home, go out in evenings/socialise more often, be able to travel long distances to visit my best friends, be able to go somewhere regularly and reliably like an evening class, be able to wander around a little more to allow me to go into shop or visit museums or events more and to allow me to take photos again which usually involves a bit of wandering/standing to get the best shot – this last one has been very hard this year and i miss it but it would not take much improvement to be sometimes possible again. I would also like to be able to take the dog out again at midday and not have to employ a dog walker to do it!
The other thing that may be coming back is the ability to do “boom and bust”… i know, i know, this is the thing that we are told never to do as people with ME! BUT the POTS symptoms have meant that i have not been able to take advantage of good days (i have not had much variation in my days – maybe operating more in terms of a good half hour!) to do something big, and to then suffer later. While this is not an ideal way to live, it does give us the option to do something we really want to, or to experience something important to us, even if we have to suffer the consequences, sometimes it is worth it!
So it is all good, and i have hope that this year will be a big improvement on the last. Even if this is a good as it will get, that will be a huge improvement. It is so nice to see the downward spiral of levels of health turn a corner and start to rise again, for the first time in maybe seven or eight years! You can see why i am excited!
The only depressing thing is that while I am getting a diagnosis and treatment, so many people are suffering with these symptoms and not getting any such joy. It is only because i volunteered to take part in a research study that i was diagnosed and got to see the specialist, and only because i live in the city i do that i had access to that option. I knew something was not right, that it was more than my usual ME symptoms and that it was seriously affecting my ability to carry out normal day to day activities in a very specific way. My doctor said “I just think your ME is very bad at the moment…” and would not refer me to anyone, so i took matters into my own hands. I was still shocked when my suspicions of POTS were confirmed but so relieved as well to have it acknowledged. I know of two other people with severe ME who almost definitely have POTS (i am no doctor!) but who have no hope of getting properly tested or treated. It is just another set of symptoms that they are needlessly having to cope with on top of everything else.
The drug i am taking, Midodrine, is not even licenced in the UK, so i think i am just getting it as i am part of the research being done at the hospital. It seems early days in POTS treatment in the UK, i hope things improve soon for everyone else as i have a feeling that there are lots of us out there needing help with this…
