Better or not?

I am wondering if i am improving and it is not easy to tell!

At the end of last week i was euphoric! I was sure i was feeling major benefits from taking my new tablets (for POTS). I was gaining in confidence that i was not about to crash after being so busy (for me) over such a long length of time and i went for a hair cut and it was the best experience i have ever had there. I got a taxi there after an early afternoon nap, as i have not been able to drive anywhere recently, particularly if i am going to do something (such as be at the hairdressers for an hour) as i can never be sure i will not have come over all ill in the meantime and then feel too awful to drive home safely. Usually in the hairdressers i feel awful; i will feel too hot, it will be too noisy, the smells will be too strong, the lights too bright, my neck and back will hurt from having my hair washed and sitting up in the chair for so long and i have frequently been unable to speak and have just apologised, then sat with my eyes closed, enduring it all…

This time i felt good! I sat and chatted throughout and it was so good to feel human, particularly as it was the last hair cut with my hairdreser as she is leaving to start a new career. It was nice to show her i do have a personality, am not always on the brink of tears, and to end on a positive note. After the appointment finished i still felt good and decided to save some money and get the bus. The timetable had changed though so i had to wait over half an hour in the cold, and waiting for buses is something i have really not mananged for a long time, as it brings on a POTS episode very quickly (sitting on bus shelter seats is as close to standing as you can get, really, and is not supported in any way) but i felt ok and my legs were not too achy, i just kept wiggling them and having a little wander around to help my circulation and was glad i wore my warm high boots! The bus journey itself was not too great but i have always been a bit travel sick and after a sit down at home again i felt ok. This was a really heartening experience for me as it was a set of circumstances i have not felt well in for a long long time. Even though i had had a nap, i was pleased to feel so good as recently even a nap has not really given me that kind of boost that it used to do, only allowed me to continue with the day and maybe ward off a bad headache etc. The next day i was a bit more tired, understandably, but felt well enough and was still happy that maybe i would be able to get out and about more, and feel better in myself on these new tablets.

Then at the weekend i felt awful! I had a really upset stomach (which had not been right since the weekend before actually, although i had felt good in myself) and i felt really weak and like i had a virus… maybe i did. After the euphoria of feeling good, it was a real crash in spirits as i wondered what was going on. Did i have a virus? Was it just and IBS flare up (Although it felt very different)? Was it an unusual form of payback? Are the tablets helping things or did i just have a very rare good day? Sometimes it would just be good to know something for certain!

So although my stomach has calmed down and feels pretty normal again, i am taking it easy and don’t feel too bad and i am hoping that was just a blip… I really do think the tablets are having some effect, but i don’t know yet if it is a very useful improvement in terms of being able to get out and about more or if it is just a case of feeling a bit better in myself while still doing very little… time will tell i suppose and maybe this improvement can be built on by upping the dosage etc next time i go to the hospital. I have not had a severe ”episode” like i had at the doctors just before i started taking the tablets, so maybe they are cutting down the extremities of my symptoms… I think i am having less severe hot flushes (although still having them a bit) and my headaches/upper back pain are better at the moment, certainly not as severe. I am sleeping less in the day as well, but i am not sure how much this is due to the change in routine i had to adopt due to everything that was going on and also taking more regular sleeping tablets, which is definately helping me as well, although i do not really know what to do long term as they are supposedly for short term use! (shhh!)

So there we are. I am just hoping that i can gather my strength for Christmas travelling and to take part in some festivities and socialising, even if only in the house. I shall try to just wait patiently and see what the New Year will bring…

freedom/exile and illness

I was reading this blog for ME awareness day, where “Signs” talks about the story in the media recently where a woman (Elisabeth) in Austria, was locked up in a cellar by her father, Josef Fritzl for 24 years, and how people find ways to survive under extreme suffering. It reminded me of Alan Johnston, the BBC reporter who was held captive for 114 days in Gaza. I saw a headline after his release and it really struck a chord with me. Like Signs, i am not comparing my life or how it is living with M.E. to being held hostage with an explosive belt strapped to me, of course not, but what he said about Freedom when he came out really made me think:

“You want to do everything at the same time, to read books and papers, go to the movies, go to the beach and sit in the sun, and eat and talk and all the rest of it” – Alan Johnston

Freedom, it seems to Alan, it just being able to do everyday things. When I read this list, I could not help but draw parallels to my own life, as these are all things that I cannot do (or greatly struggle with) sometimes. I cannot do some of these things for months at a time, maybe even 114 days…

Also, in interviews about his time in captivity he has talked about things that made it easier for him to cope, such as listening to the radio and hearing that people were trying to get him released and were thinking about him, and being allowed to watch football once. This is something that interests me as i have found great comfort and joy in small and simple things when at my worst. When life becomes very small and you feel cut off from the wider world, small things can take on a greater pleasure or significance than they otherwise would.

This also brings me to a post by Rachel yesterday called “one day i will…” where she thinks about all the things she wants to do one day (when she is free if this illness) that she is unable to do now and considers that that day may never come. This is something that everyone with a disabling health condition has to come to terms with, but for those of us with fluctuating conditions where there is no prognosis as such given to us, how do we think about the future?

I am often asked by doctors, occupational health, psychologists etc the same question: “How do you see the future?” I hate this question and am usually flippant in my reply these days, saying i have not got a crystal ball. The reason it is asked is, i think, to perhaps get an idea of my mental state, and also (definitely) to judge my motivation to get back to work, but it is not a question that can be answered simply. I am also asked if I get the same amount of pleasure, or joy, from things as i used to. This is something asked recently with ticky boxes on my CBT forms… but there is no box to tick for getting more pleasure from something. Sometimes when I have been able to do something that I have been trying to do for months it can provide such a sense of achievement and pleasure, far greater than it would have otherwise.

I am reminded of Rachel M and her photo for ME Awareness Day: Long Driveway where she describes how cut off from the world she can be and also her blog about meeting up with a friend: Big Day Out where she is so full of joy to have been able to go and meet up with someone and have such a nice time, and how it left her smiling for so long afterwards.

Lastly, I read “The Plague” by Albert Camus a while ago, which is a novel about a town in which an epidemic breaks out. The town gates are closed off and the inhabitants are trapped inside and no-one knows how long they will be there for and whether they will catch the disease. These people are trapped and living in fear and the book looks at how they respond to this situation. Some of them were just visiting the town and felt they should not be there at all, some of them are separated from loved ones and do not know when/if they will see them again. These sentences are taken from pages 67-68 (Penguin Books, 1960)

“…we returned to our prison-house, we had nothing left us but the past, and even if some of us were tempted to live in the future, they had speedily to abandon the idea… once they felt the wounds that the imagination inflicts on those who yield themselves to it…

…our townspeople very quickly desisted… of trying to figure out the probable duration of their exile. The reason was this. When the most pessimistic had fixed it at, say, six months; when they had drunk in advance the dregs of bitterness of those six black months, … and… straining all their remaining energy to endure valiantly the long ordeal of all those weeks and days… (something) would suggest that, after all, there was no reason why the epidemic shouldn’t last more than six months; why not a year, or even more?…

…Therefore they forced themselves never to think about the problematic day of escape, to cease looking to the future, and always to keep… their eyes fixed on the ground at their feet. But, naturally enough, this prudence… refusing to put up a fight were ill rewarded. For, while averting that revulsion which they found so unbearable, they also deprived themselves of those redeeming moments, frequent enough when all is told, when… they could forget about the plague.”

 This, to me really sums up the tightrope we (with ME and others whose freedom is compromised) have to navigate when coping day to day and dealing with the uncertainty of the future.