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balloons
This last weekend I went to my sister’s wedding. My partner drove me and the dog the five hours each way to Wales and we stayed with my mum, which was really good, except for our room being on the third floor!!

 

I was quite worried about going as my levels of energy and stamina have been so low recently and the thought of the travel, talking to so many people, getting through the wedding day itself, potential payback and just everything about it was very daunting.

BUT it went quite well. We came back on Tuesday and although i don’t feel too good, ache all over quite seriously, and seem to be getting a cold, and can feel there are still days of recovery to go; I can say i have survived!

There were some very dodgy moments: on the wedding day i felt pretty bad in the church. I already had “permission” from the vicar not to stand for hymns etc (which on the one hand seems silly as if you can’t you shouldn’t need to get permission, but as i was in the front row it did make me feel more comfortable with not getting up to know that most people knew why) but i had to not sing as i was so lightheaded as well. After the service we went to the reception and i could hardly hold my head up and keep my eyes open until lunch came at half past 3! I ate it then left for bed before the speeches. I could not really rest properly but had two, one hour rests with some food in between, then at 8pm went back to join in the evening do. I actually got a second wind and really enjoyed it: talking to people, meeting some of their friends i had heard about but never met, as well as some of his family and actually DANCED with my sister (for half a song – maybe 2 mins) but my spontaneous act made her cry, which set me off too and it was a good “moment”! She has ME as well, so it meant a lot to us to dance together!

My body seemed to find some energy or be running on adrenaline for several days, which was very convenient, if a little unwise. It was nice to feel it perform for the occasion, even if it goes against all the pacing rules. I could feel it waning by monday, as even though i rested well on sunday i still felt ok. The journey back was hard. It went fine and the traffic was fine, it was just my body and my brain that were not and i found it very hard to cope with. It was like being strapped to the front of a torpedo and rocketting forward out of control not knowing what i would hit, but feeling very much in danger. Not being the driver can feel scary, even when i do trust the driver as motorways can be scary places – but when my brain is not processing information properly i think it feels much more scary. I would have been happier on a horse and cart going about ten miles per hour – it would feel less violent. I also found i was pushing my feet into the floor of the car when we were braking as if to help us stop subconsciously. Even when i realised i was doing it late into the journey (leg pain was a giveaway) i found it hard to stop… just so exhausted and wound up.

So i think i have not perhaps even properly crashed yet… i am in pain and i am spending a lot of time in bed but i am ok. I hope this is it, but i fear i have a cold so this week may not be much fun. At least i can sit in the sun a bit if the forecast is right! I am so glad i was there and took my place at a family event.

It was lovely weather when we were there and the day after the wedding lots of hot air balloons flew by, which was a really nice surprise! I love the sound of them and have always wanted to go up in one. It was nice to have that random surprise event too!

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…

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