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…

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