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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!

 

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My application for DLA has been turned down…

It has been so much hard work. Filling in the form took 6 weeks and felt like a lot of work, i had someone to help me and even then we only got it in the day before the deadline. The first three weeks i was completely unable to even think about it or concentrate on anything like that, and just managed to write a diary for a week as supportive evidence, then the next three weeks were spent filling it in with several short meetings with my benefits adviser who wrote it all out for me. It really exhausted me especially as we pushed to get it in in time and i was not really up to working on it. I got very down as i found it completely demoralising.

Then two weeks ago i had a medical and it was a nightmare (the same week as i had to fill in my incapacity benefit form, and with a phone call on Wednesday asking me to go on Friday i then had to push on with my IB form as i know i would be unable to finish it at the weekend, as well as reading up on what to expect at the medical). I found the medical very stressful. My partner came with me thankfully, and write notes as to what was said. We had to wait half an hour (which i believe is standard for “observational purposes”), then spend a whole hour in with the doctor.

I won’t go into ALL the details but I was feeling very weak and “past it” by the time i saw the doctor, (at 2pm, and although i did lie down before we left the house I would usually have had a nap by that time, and with the extra stress of the occasion i was not feeling good) my back was hurting, i felt very light-headed and dizzy (even sitting down) and was having trouble speaking and expressing myself clearly which led to tears of frustration as the doc was so ineffectual. The doctor could not type well (2 fingers and slow) and seemed not to be able to listen and type at the same time, which meant that he asked me the same questions over and over (and over) again, constantly getting my answers wrong and even interrupted me if i responded with anything more than a yes or no answer as it seemed he could not cope with typing sentences or deal with nuanced answers, which frankly with a fluctuating condition you are going to get when you ask questions like “how far can you walk?” “Can you do x for yourself?” etc. there are not many things i can say a definite yes or no to! I felt forced into oversimplifying my answers, as i had to on the form, which makes you feel as if you are lying, but the questions are not designed for M.E… by the end of the hour I could barely stand up and made this clear (i refused to stand to do exercises and sat instead on the bench, although he then made me stand against the wall to do a sight test (did i say i can’t see?) for a minute or two…). How that medical could not have backed up what my form said i do not know…

That took a full week to get over, during which i ached literally all over, and barely made it out of the house (very short dog “walks” when essential), had head pains and generally felt as weak and as bad as i had said on my form… actually even worse, which made me not doubt myself so much (It is easy to feel guilty when i have a better day or two and i can do things i have said that i generally cannot – forgetting how bad things are 95% of the time, and i have not even been given any money yet! It is ridiculous to feel that way when i am only trying to claim something i am supposedly entitled to…). I thought, if i could do a video diary of the impact of a one hour doctor’s assessment, maybe they would get it! I slept as much as possible. I did not feel too down, just incredibly weak and drained of all energy. I did the bare minimum in terms of dog walking, personal hygiene etc… The thought of going to Scarborough for the weekend gave me something to rest for so i knew it would be worth it if i could make it.

Scarborough was great – it could not have been better – see separate post!

Then Friday i got a letter saying that i am NOT virtually unable to walk, that i CAN prepare a meal for myself etc etc. Very occasionally this is true… most of the time however it is not. Even if i do these things, the impact that having done them has on my health and my ability to manage my symptoms and how i then feel the next few days (when i would most certainly not be able to do the aforementioned things), means that i would have been much better off not having to do them. Also, been able to do something sometimes, and not knowing how much “payback” i will get is not a lot of practical use as i can’t plan to do anything as i never know when my “better” days (or is more often the case, better hour or so) will be…

Anyway i am going to appeal and hope that at the tribunal there are intelligent people who can see the limitations that I face in daily life and hopefully they will be able to see that they fit with the DLA criteria if you have half an imagination… here’s hoping… Apparently that can take months to happen so i will just have to get the correct form, send it off and then try not to think about it too much in the meantime and hope that i feel able to cope with it and the stress it will undoubtedly cause at the time.

Here are three out of a recent film i took at the nature reserve near my house – not even on flickr yet – hot off the press!! I have only in the last year or so worked out how to use my Practica camera and it is quite cumbersome and heavy but I have some filters that i can screw onto the lens which magnify the image up to 5 times which is really great. The good thing about macros is that you can find something to take a picture of anywhere – even on your doorstep – i have enjoyed re-discovering areas that i thought i had taken pictures of from every imaginable angle… i was wrong!

Rachel M commented on my last post and said she would love to take macros so i thought i would post some for her to keep her going until that is possible…

I cannot believe how long it is since i last posted and this is not even going to be a proper post – more a holding page to say i have not disappeared! The last few weeks have been unusual as my partner went away for nearly two weeks, some of which i was alone and some of which my mum came to stay so i was either fending for myself or spending time with my mum, so had no energy to blog etc. Since she got back i have been firstly recovering, catching up and getting back to normal and then DLA rang on Wednesday and booked me in for a medical on Friday… needless to say it was a fairly horrible day and since then i have been mostly in bed. Feeling semi-human this evening but still taking it very gently. There has been so much i could have blogged about happening, but i have not had any free energy to give, and have also been having a lot of headaches… such is life with ME… BUT I have another reason for not blogging much any time soon and that is i am planning a weekend away this weekend with my sister to a hotel which offers massages and other therapies and a very chilled out atmosphere! So am hunkering down this week and saving all my energy to make sure i can (a) get there (2 hours on train) and (b) not lie in bed the whole time!

So for the meantime i am posting a picture of Steel Rigg, which is on Hadrian’s Wall which my mum drove me to last weekend – it was a beautiful drive and we sat listening to larks and watching rock climbers and it was so nice to get out of the house in a relaxed way on a sunny day!  

 

ME/CFS Awareness

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