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Well, it is that time of year, after all.
It will be my second holiday as i went to Holy Island (with my partner and dog) in February, which was a great week and did me so much good. See my post about that here. I was only saying recently that a) the year is flying by and i don’t feel like i have done much apart from our holiday and b) if it wasn’t for that holiday i would not have taken many good pictures this year as yet, which was my main resolution for the year: to get out more to photogenic places!
So this time i am off to Scarborough again for 4 nights. I am going to the same place i have been twice before, once with my sister and once alone. This time i will also be alone. My partner is going to Spain for work reasons and i really struggled last time she was away, and had quite a lot of “payback” in recovery from being alone, so i thought i would go away too. At least this way i can have my meals made for me, have no washing up to do and hopefully have some fun as well along the way. If i am going to overdo it, i may as well have some fun!
It was/is a bit of a gamble. I had the idea a couple of months ago and was operating at such a low level health-wise then that i thought there was no point in going, as i would find the journey too hard and not be able to leave the hotel at all. The last few weeks though, apart from the odd blip and a series of very bad headaches, I have been feeling stronger and i think now there is a good chance i will deal with the journey ok. That is, as long as the disabled assistance turns up WITH the wheelchair I have booked to help me change trains, unlike they did at one point in my journey last time i went - ”they are all being used” was the excuse… hmm i only booked 2 months ago!!
I also think because it is summer this time i will be able to sit outside more easily. Last time i only left the hotel once and went for drink in a pub as it was December and there were not many warm options. This time i can sit on the beach, in the park, or just in the garden at the hotel and that will be much better. I am taking a couple of cameras and a notebook and hope to be creative too (maybe a haiku or two!?). (i know i am repeating myself from a previous post here, but never mind, it is worth repeating myself when i am excited!).
I have been able to read more lately as well, as my eye muscles seem stronger and my blurred vision is less regular and my powers of concentration are a bit better too; so i am taking a (hopefully) good book of short stories to read as well: The Winter Book by Tove Janssen (of Moomin fame)… she wrote one called The Summer Book too, but why be seasonally correct?! I have read the intro by Ali Smith (who i admire greatly) and she makes it sound so amazing that i hope the book is not a let down after such high praise!
I can have a massage or two while i am there and hope to meet and chat to some interesting people like i did last time. The hotel owner has promised to help me wash my hair mid-visit and to cater for my odd dietary needs, so off i go!
Wish me luck! I shall catch up with you all next week…
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, i have been really enjoying the sunshine recently! I am currently sitting on the doorstep with my jeans rolled up, my forearms out and my face and neck exposed also. I have decided to make sure that if it is a sunny day i will make sure that i sit outside in it for ten-fifteen minutes at least, in order to get my vitamin D for the day. I had a quick surf on the net and it seems this is all that is required.
I have not read into it fully but i am aware that there is research on ME and Vitamin D deficiency going on, so i think i may as well do what i can, just in case it helps! Also there is osteoporosis in my family, and i am a vegetarian so i may not get as much in my diet as other people, although i read that it is hard to get enough just through diet alone anyway.
Of course, i hope to sit out in the sun for longer than this over the summer but i may well cover up and wear suncream for any length of time much over this amount, especially in the height of summer, as i don’t think getting sunburn is fun or a good idea! It is good to know that something so simple can allow me to get enough vitamin D (assuming people with ME can make it the same as others do…). Knowing the climate i may have to seize the moment some days as you never know when the sun will go in in this country!!
Yesterday i definately got my quota, as after over two weeks of living in a cold virus ridden household (first my partner, then me) we both felt better and went out for easter sunday! It was warm and there was not a cloud in the sky. First we went for some lunch in town, but it felt so wrong to be inside, so we relocated to park, then a nearby pub garden and sat in the sun playing cards for a couple of hours! My back got quite sore from strange and unsupportive seating (despite having my cushion with me!) and i was exhausted when we got home but seem to have come off relatively unscathed after sleeping almost continuously until 1.30pm today! It was so nice to spend time together relaxing and to be out of the house and feeling good after some very tough weeks (before we got ill was very busy and i was not feeling well at all).
Hurray for the sunshine! AND after my mum came to visit and did lots of work in my garden (thanks mum!), and i planted some seeds, some are coming up today! I think it is the miniature marigolds… ahhh! Let’s hope the slugs and snails don’t fancy a snack before they get a chance of life. Fingers crossed for the californian poppies as well, then my garden will be a sea of orange flowers this summer 
Well, last weekend, despite a bad lead up (see last post), i went to Scarborough!
I had booked it well in advance and although i knew there was a possibility that i would be unable to go when the time came, or that i would get there and just lie in bed the whole weekend i was determined to give it a go. I booked it when in the process of applying for DLA (as felt so depressed i needed something to look forward to), in the hope that by the time the weekend came i would be in receipt of some extra cash, alas it was not so, but it turned out that thanks to the DWP sending me my incapacity benefit form (to reassess my ability to work) and having my DLA medical the week before, i needed it more than ever.
My sister also has ME and has been really struggling lately so i invited her along too and so we had some quality sister time! We do not see each other much as she lives near my mum, over 5 hours away by train for me, which is not something i can do without serious trauma & payback. She had to travel over four hours to Scarborough, whereas for me it was only two, but we travelled the last hour together as at York i got onto her train!
I chose last weekend as i tend to feel a bit more human the week before my period is due (contrary to the rest of the female population, but i like to be different!) so i booked it then and hoped for the best. I could never have believed that it was possible to go from how ill i felt a couple of days before i left to how i felt when i was away. I usually say how frustrating it is to have to take my illness on holiday with me, that there is no escape, which is usually true, but i really felt as if i had a holiday in every way! Of course i was not going out dancing and behaving as if i was not ill – i had a good sleep every day and paced myself as much as possible but i did not have a headache, my legs did not feel too painful until the last day, and my back coped with sitting on the train for two hours much better than i could have hoped for.
We stayed at the Fountain’s Court Holistic Hotel, which i chose because it is a calm & quiet place that offers all kinds of alternative therapies. We both had a Tibetan Acupressure Head Massage the afternoon we arrived and it helped me to relax and shake off the journey completely. I also had two sessions of Reflexology over the weekend and my sister had a Shiatsu Massage and a Hot Stones Massage. I had rung up in advance and had explained that we were both unwell and that we may need to sleep in the day and have peace and quiet and we were assured that we would be well looked after, and we were! We were really made to feel at home. A highlight for me was on the Saturday afternoon after a good sleep we had a hot tub in the rain! We also went to the Sea Life Centre. Sunday was really windy but bright sunshine so i took quite a few pictures as well.
After i got home i did feel less well, but nothing too bad and i feel i got away with the extra activity without serious payback… hurray!
A few days after getting home though, i found out that my DLA application has been turned down and i did feel really down about it that day, and as if all the benefits of the weekend had suddenly gone, but i have pulled myself together, looked at my sunny photos and won’t let the b*****ds get me down 
In general i have come away from the weekend feeling much more able to deal with all the things that need dealing with: benefits, insurance company, CBT, medical issues, etc. I know they are all tricky and i still don’t know what to do for the best in most cases, but i have certainly benefitted from having the boost of a change of scenery, meeting some lovely people, feeling really good for a couple of days, seeing my sister (and singing in the hot tub), having relaxing treatments, taking some good photos, feeling that i can cope with a short journey (sometimes), and knowing that there is somewhere reasonably nearby i can go when i need to do it again, which i am sure i will!
