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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…

Well, so much has been happening… and now at last time to relax a bit and report back…

Last weekend (end of November), i went to Scarborough! On my own!

Well, it is a two hour train journey and i booked disabled assistance for the first time. It went well and there was (usually) someone to meet me with a wheelchair to push me between trains and to carry my luggage as well. There was no-one waiting for me at Scarborough station, but my train pulled in right by the exit and there was no queue for taxis so i managed fine. When i arrived back to my home station there was a man to meet me but no wheelchair, as they were all in use… not really good enough when i had booked two months in advance! It was not too far to walk to the the station exit and he pulled my case for me, but the taxi queue was long so i had to take out my tiny folding stool and sit on it, but keep getting up to shuffle forwards as the line moved along… not exactly comfortable and the reason i booked the chair was to help me get to the taxi as it is standing in particular that is hard for me… as well as walking for more than a few minutes… well nothing is perfect and luckily i was not feeling too awful, but i could easily have been… he offered to queue with me but i told him could go as he was no use without the wheelchair… so i would say 7/10 for service… I was pleased that i could step off the train myself and was not dependant on them coming on to get me as i would have found that stressful, and i don’t think they are 100% reliable based on my limited experience. I will be travelling by train at Christmas as well, hopefully only one way, but a much longer journey and have booked assistance again. I hope it works then as well!

By the time i got to Scarborough i was really drained and felt very weak. I booked into the hotel (the same place i went last time) and could not really take in what was being said to me as my brain was shutting down… I lay down for a while and felt a bit better though. My feet were like ice and despite an hour and a half with a hot water bottle, when i went downstairs for my first treatment – reflexology – my feet were still not properly thawed out! The woman who was doing it said she couldn’t decide if they were warm or not as they felt so strange! My circulatory system is not well behaved.

I had another lie down then ate at the hotel that evening, and got talking to a really nice couple while i ate. The food was really good and it was nice to chat to new people and i really enjoyed the opportunity to be sociable as i find i rarely meet new people and have the opportunity or energy to talk properly.

The next day i had breakfast brought to me in bed (yes, this is a heavenly place) and then had a shiatsu massage (my first ever and really good – she did a gentle version for me which felt just enough to do something but not hard enough to cause any flare ups or pain – afterwards i felt looser and that everything was flowing better) then another sleep. I felt quite good then so i got a taxi down to the harbour and sat outside watching the sunset!


It was not as cold as i expected (i was well wrapped up) and it was so nice to be out in the fresh air. I wrote some postcards which i got from a shop next door. Once the sun went down and i finished my hot drink i went into a pub to warm up for a bit, (this is the view from inside the pub, of the remains of the sunset)


then went back to the hotel feeling pleased that i have made it out and about, as i feared i would not be up to leaving the hotel much and maybe not brave enough on my own. See my other blog for another picture of the sunset. I ate in the hotel again and chatted to the same couple which was good. I took a sleeping tablet each night i was there to maximise my chances of having good sleep and therefore good days!

The next day I had an aromatherapy facial in the morning which turned out to be more like a shoulder, neck, face and scalp massage with a face mask thrown in (i could have lived without that bit as my face didn’t seem any different afterwards) but the massage part was amazing and she really gave my scalp and head a thorough going over and as my head is always tense and painful it felt as if it released so much tension and got the circulation going really well. I had a nap, then my Mum came to visit for lunch as she was coincidentally in the area! She drove me five minutes along the road to a cafe and we had a nice lunch, then we drove all along the seafront (north and south bays) to get a feel of the place and see the sun setting again before going back for a cuppa in the hotel. I felt a lot weaker than the day before, and quite lightheaded and became tired quite quickly but it was still really nice. I had another sleep before the evening meal again, which i ate with the hotel owner (Helen) as i was the only guest at this point! It was nice of her to eat with me as it would have felt odd to sit on my own.

Got up the next morning very early for my train and Helen drove me to the station as she had time, which was very kind and gave me a big hug goodbye. It is so nice to know that i have somewhere to go for a change of scenery where even if i am really ill and need to stay in bed i will be looked after :). I felt a sense of independance in managing to go away and largely felt fine while i was there. I wonder if the new tablets for POTS i am taking helped? Hard to tell. I feel it is so important to keep trying to do things, within reason and with careful planning, or i would miss out on so much and get stuck in a rut of thinking i can’t do anything or go anywhere… As my partner went to both Shanghai and New York this year and i was unable to go due to my poor health i felt it was important to try to have my own holiday as well.

Home again:

So then i got back home and have had a crazy week! I have had to abandon all routines, and have struggled to fit in my daytime naps most days, or have had them much later than i would like. I have had to get up early, then stay up for deliveries and post (the downside of doing xmas shopping online), then be in for the dog walkers to pick up and drop the dog back an hour later, then one day the cleaners came after that (after cancelling last minute earlier in the week, so i had already prepared for them and stayed up). We have had men in to fit new doors… well i use the past tense but they are not finished so we still have gaping holes around the new doors letting in a lot of literally freezing air (and probably snow flakes too!). They were supposed to come back the next morning to finish the job but the man’s axle on his van bent from driving on the ice, then was supposed to come the next day and he broke his little finger by slipping off his icy ladder. So fingers crossed (those that can) he will be able to come back tomorrow! Added to this the boiler broke down so we had no hot water (except the shower that i can’t really use for too many complicated reasons to go into now) and no heating except one electric radiator and a gas fire. Add in many drafts from front and back doors not sealed and sub zero temperatures and you get the picture… So i was ringing around, organising men to come and do these jobs, making numerous cups of coffee, fetching things for them and generally doing things i knew i shouldn’t, but did not feel i really had any choice.

Also my partner’s parents arrived on Friday night for the weekend, and the boiler was only fixed in the nick of time! The house was a tip from having the door men in and it all felt like chaos. The visitors left yesterday and today i am just going to do very little and see how my body is… i feel that i have been running on adrenaline for days and i am not sure what will happen next!  Again maybe the POTS tablets have been helping me cope as i have been more active and largely coping… who knows?! I am certainly still feeling POTS symptoms, but i am not sure if it is maybe less severe. I am unsure what feelings of weakness etc are from POTS and which are from ME, so it is hard to judge, especially when my usual routines have been so broken.

Also the boiler stopped again this morning… it has resumed activity after we pressed the reset button, but i suspect that the problem may not be completely solved, despite a new flue fan… i am hoping for an uneventful week once the door men leave tomorrow, what are the chances?

ME/CFS Awareness

ME/CFS Awareness


December 2008