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When will all this money stuff end?

My employer has very kindly informed me that i could apply for early retirement through ill health. This does not mean they know i am eligible, only that my pension may be frozen soon as i have been off work for 2 and a half years so the opportunity to apply may then cease; so they are telling me it is an option… i think i can apply and then see if i want to take it when i know the outcome of the application.

I know nothing about this and now i have three weeks (now 2 and a half) to find out all about it and decide if i should apply. As it will involve medicals etc i do not want to bother if there is no point. Also as i only worked part time for a few years it is not a big pension that i have and it may not be worth it in terms of the effects it has on other benefits i get, such as incapacity benefit. But with the changes to incapacity benefit, is that even safe for the future and should i try for anything i get chance to have?

It seems i can apply and then be awarded either full or partial incapacity (or nothing, obviously). Partial is probably not worth much as it is a reduced amount, and if i get it. my HPI insurance payment will stop (as it is an earnings protection payment and i would be retired! HPI is worth a lot more than the partial incapacity payment). To get full i need to be seen as unable to do my current role or any other in the long term… how can this be proven with a condition like ME? I have been ill for 10 years and am unlikely to be ever fully well again, but you have to be unable to do more than 10% of previous work. As i was part time, i am not sure if they would count that level? (that would be 2 hours per week). I think i could argue now that i am unable to consistently do that and have been for a couple of years, but to say that i could not in future is tricky. I have started medication for POTS symptoms and have seen some improvement, and am unsure if more improvement will come, or not. If awarded they keep tabs on you and if you improve/work then the benefit stops, which is fair enough. Again the amount for full incapacity is not much on an annual basis, but the lump sum is quite healthy!

Another thing to consider is how safe my HPI payment is long term, can i count on that?

Does anyone have any experience of applying for ill health retirement with CFS/ME? If so any info/pointers would be welcome!

The other thing is that i have my student loans (three years worth) sitting there unpaid, as i have never earnt enough to start to repay them. I think i remember somewhere that if you retire due to ill-health you don’t have to repay! That would be nice… otherwise it is written off when i reach the age of 45 if still unable to repay, so another 13 years to wait on that score…

comments and any help welcome on this one!

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I have a new exercise to do!

I have slipped in my exercises over the last couple of weeks, due to the tribunal and then the holiday, but yesterday i went to see a Physiotherapist and he gave me an exercise to do to strengthen my middle/upper back! I have been trying to find something to do about this for some time and have asked various people but this time it worked.

The exercise involves lying on my front with my arms down resting along my sides. I am going to raise my upper body from the floor using mainly my upper back muscles. To do this i have to sort of lower my shoulder blades (towards my waist) and clench them together (like sticking chest out a bit, pushing shoulders back and pulling shoulder blades more together). In order to protect my lower back i need to tighten my abdominals at the same time and also breathe as i am doing it! He said i have quite a “good” curve in my lower back so i may benefit from putting a cushion under my stomach to protect it even more, so that it is not doing all the work.

I do not suggest you try it just from that description, but i thought that if you have upper back pain (mine is between and under my shoulder blades in the centre of my upper back, and is often just tender points of pain, which the physio said is very common in postural problems) it may be useful to know that there is such an exercise that you can enquire about it specifically if you see a physio yourself. I will update on how it is going in a few weeks!

I think all the time i spend sitting and lying down, combined with the effect on my muscles of various aspects of the illness means they are not exactly “fit” which is causing pain and stress in that area. I don’t move around enough! This of course affects my whole body but i am just focusing on the painful bits for now 😉

He said that in a healthy person he would get them to build up to doing several sets of ten per day, each holding for a minute or more! I was trying it in his office and my muscles started to shake/shudder after less than half a minute so he said to just do it when i most feel up to it and just to do one for a very short time to start with and build up as i can as the shaking means my muscle is too tired to do it! Oh dear. But slowly and surely i think it is possible to strengthen this area, which has caused me problems throughout my illness so anything i can do to strengthen it must be good.

The pain has improved recently with taking the Midodrine, as supposedly more blood is getting to my muscles up there, but it is obviously still an area of weakness. This seems a good time to try to capitalise on this small improvement.

He also gave me a sheet of other exercises, some as simple as rotating ankles and some more strenuous. I am going to do some of the simple ones and see how it goes. The POTS specialist did tell me not to do any exercises (i specifically asked if there were any that may help with POTS) as i had to take things very slow so as not to cause a set-back i think. I am however just talking about a few very gentle movements to keep things moving and cannot see the harm. I will mention it to her when i am next in contact…

The fact that the Midodrine is working quite well means that i feel able to move a bit more easily and maybe do some of these exercises, whereas before i could not move at a normal speed even at my best time of day and just getting out of a chair was a major effort. It still can be, but i feel more able to bend down, stand up for short periods etc and move without major dizziness which is helpful.

The reason i was meeting the Physio is that i was referred back to the Lifestyle Management Group for CFS/ME by the CFS specialist. I attended their group sessions a couple of years ago. I was pleased yesterday to see that he (the physio) did not expect me to go back to the groups sessions if i did not feel i needed a refresher (i did not feel any benefit last time and did not learn much as i had already been ill for many years and it was not new info. I do not want to have to attend again and use up so much energy on it, for little benefit). The Specialist had referred me again because my condition had deteriorated so much, and “i should be feeling better than this”, whatever that means, i think he has nothing else to offer. He also said it may be useful when dealing with insurance company (for HPI), benefits stuff etc to be seen to be having “treatment” (i do not consider what they offer to be treatment but there we are.

The physio said i can go back anytime to have a chat with one of them  (there are Occupational Heath people, psychologists etc too) if something comes up that they can help with, so that is nice to know. I may go back and ask him for more exercises or to discuss the ones i am doing in a couple of months, as it is good to have some supervision i think. So i am really happy i do not have to go to more appointments which i do not feel would be much benefit at this point. The sessions include things such as “pacing”, exercise, goal setting, managing emotions, communicating your needs, relationships, sleep, flare up planning, diet, benefits, etc etc. Half of the programme is CBT influenced and i wonder how the programme will change if the NICE guidelines court case that took place last week is successful… we shall see.

I am back from my week’s holiday and i can say it was a successful trip 🙂

sunset

We went to the Holy Island of Lindisfarne, which is right up in the far North East of England, just a few miles from the the Scottish Border. It is literally an island and is cut off from the mainland by the tide twice a day. It was nice to feel cut off from the rest of the world by the tide, and also by the lack of internet access. It felt like a retreat from my usual life and a chance to do things that i do not usually get to do.

Things i wanted from the week were:

  1. to spend more time outdoors and feel part of the landscape, not just be a “tourist” passing by in a car, as i often do these days
  2. to experience being outside at different times of day, as i usually only go out in the middle of the day (if at all!)
  3. to take some good photos
  4. to have some fun!
  5. to go on a pub crawl! (As there are at least three pubs in the very small village).
  6. to learn more about the Lindisfarne gospels by going to the Lindisfarne Centre on the island
  7. to do creative things (painting/drawing etc)

So, which ones did i manage?

Well, i did most of them…  i did not get to the Lindisfarne Centre, though i did read a bit about the Gospels and the history of the Island in books that were in the cottage we stayed in. I did not manage to do much creativity either – i wrote one haiku (see below), but there was not energy or time for other bigger creative activities after walking about the island a bit and going out for occasional pub meals, and a trip up to Scotland to a craft centre and tiny fishing village and sleeping and resting between each thing. Also i did not manage a “pub crawl” as such, though i did go into several different ones. Seeing as i don’t (can’t) drink alcohol it would not have been very authentic anyway…

I was really pleased to do some walking around the village and also along the shoreline and harbour. The shops and pubs were just metres from the cottage, which made little trips out to them manageable. I walked quite far on a couple of occasions and it was so nice to feel the ground under my feet, feel my body “working”, see the lovely views, take some photos and feel connected to the landscape, to be in it and part of it, in a way that only “walking it” can do for me.

I did not always feel great by the time i got back and i think i am still recovering from the longest walk i did on Thursday, and it is now Sunday! But it was so worth it and i had to seize the opportunity while i was in that beautiful place. It seems that, try as i might to change, the things that give me most joy are still the things i used to enjoy as a “well” person. It was a treat to be able to do it, but i wish i could find something to replace that with for it’s therapeutic & mood enhancing benefits, enjoyment and buzz that i could do almost every day, as i used to go for a walk all the time.

On that big walk i felt well and my body behaved itself and i did not feel any POTS symptoms really, despite being upright (with regular sitting rests on benches) for about an hour. I often stood still for taking pictures and it was so nice to feel good, reasonably strong and able. Although i have felt that i overdid it and am still recovering energy-wise, there would be no way i could have managed that without the POTS medication, as i was rarely able to walk for more than five minutes before and any movements were slow and so much effort. I now find that sometimes, if i pick the best time of day and have had enough rest etc etc, i can move in quite a normal way, get up from a chair quite quickly and walk at a reasonable speed, at least for a short time. That is really nice, and gives me some hope for having some nice wanders about this summer. I miss wandering!

viewfromhill

I climbed(!) a small hill to take this (and many other) pictures. All these photos are just using my phone as i have not got my films developed yet. I hope there will be some better ones to come!

One of the main highlights of the week for me was when we went out in the evening and sat on a bench overlooking the castle in the dark. We took the torch from the cottage which was useful as there was only one street light on the way! It was very cold so we wrapped up well. It was really quiet and there was no-one around. We sat on the bench and looked out to small lights on the water, out to sea and along the coastline. There was a bunch of flowers tied to the bench and the cellophane rustled in the breeze and we could hear the water lapping gently at the shore just a few feet in front of us (though we could not see it!). The best bit was the castle. We could not see it, but every minute or so it was lit up from behind by the light of a lighthouse which was out of sight behind the castle mound. The light was green and not very bright and we could just make out the outline of the castle before it disappeared back into the darkness. I wrote a Haiku about it:

Illuminated

Dark castle mound: back-lit by

Rotating green light

Obviously i could not take a picture of it, as it was far too dark but now the image is cemented into my mind. You will have to imagine it too!

After the success of the evening walk, a few days later we tried a dawn walk. I set my alarm for half past six and out we went back to the same area. My body was not quite so happy about that and the dawn was grey and not very inspiring! I was hoping for a glorious sunrise but you can’t win them all… here is one picture i took on my phone once it got light enough that morning just before going (crawling zombie-like) back to the cottage for some breakfast then back to bed.

holy-island

 It was often cloudy during the holiday, which was a disappointment, as it limited when i could take good pictures but the sun did come out on my big walk on Thursday so i can’t wait to get the films developed and see what comes out!

I feel really happy that i managed to do so much while away, and coped with the awful bed and unsupportive chairs and being away from all my other home comforts quite well too. It took a little while to relax into it but i really feel better for having a change of scenry and a break from the usual routines. Travelling anywhere is such a challenge and it doesn’t always work out very well, so i am so pleased this was a success!

I know, it’s not like i have written much lately anyway, as this week has been a mixture of very busy and also recovering from the Tribunal, but i have come through the other side just in time to say that i am “off” again, literally away this time. I am going on holiday and away from my computer and internet access of any kind. Actually it will be a nice surprise if my mobile phone works!

I am not going far but far enough and can’t wait to go! To smell the sea, and take in some new scenery. I have packed 3 cameras (plus my phone which has one) as well as various art materials and i am all set.

Later! Hope you all have a good week,

Ashy xx

POTS: I went to the hospital again the other day and saw the POTS specialist and told her that after over three weeks on the higher dose of the medication i have not yet started to feel the benefits of it, in fact i have been feeling worse than on the lower dose.

I have been having quite bad side effects, particularly affecting my temperature in bed in the afternoons, where i will feel cold despite two heated wheat bags, a hot water bottle, two duvets and central heating… only to suddenly get very hot and sweaty and covered in goosebumps after about an hour of feeling cold. The top of my head was also cold and i was having to cover myself completely with the duvet! Also i felt that my stamina and recovery time from very small activities was worse. I am not having the POTS “episodes” so much although i am still dizzy and have trouble standing for long but that it at least an improvement.

So i am now back on the lower dose. i hope that i feel the benefits i felt when i was on it before, as i am starting to doubt that it was a big improvement and that i am thinking things are seeming worse now because my hopes were raised too high. It is so hard to measure/judge how bad things are as it is so subjective and changes according to what is happening at the time.

Also i wonder where we will go from here, even if the lower dose makes me feel a bit better, if i cannot tolerate the higher dose. After hoping for double the improvement on the double dose, i am wondering again if this is it.

Interestingly at the hospital my tests when i stood were different than before i was on the medication. My blood pressure did not drop as much when i stood, and my heart rate went up and down a bit but was not as ridiculously high as before nor as consistently. So it seems i should be feeling better and more able to stand… but am i? I feel as if i can stand up a bit quicker and be less dizzy but my stamina for standing is about the same. I still get weak and dizzy quite quickly. It has not lead to the acute “episode” event which would happen regularly when out at appointments etc though and this is very good. I don’t mean to sound ungrateful, because i am, really, it just feels like a step backwards.

DLA: Well my tribunal is in two days. I am trying not to let it stress me out but i think it is taking it’s toll on me. I have been feeling quite down. An adviser woman came around to talk to me about what to expect, told me things to watch out for and what will likely happen. This has helped a lot, although it was all as expected really she did highlight some things that i had not really thought though. I do not think i will get much out of it but i just really hope that they listen and that i feel they have made a fair and considered judgement, even if i am not awarded anything. If they do not listen or allow me to explain how thing are properly it will be so frustrating, as the DWP medical was.

Holiday: The thing that is helping me to distract myself from the Tribunal is the thought of going away for a week! I will have a week to recover from the exertion of the tribunal, then my partner, my dog and I will be going for a week in a cottage a short drive up the coast. I am so pleased my partner can drive now 🙂 I just hope it does not rain all week so that i can take some photos and enjoy the views. I know it will be freezing cold but i think i can cope with that (as it is the same here after all). It is a small price to pay for not being able to travel abroad and it is a beautiful area anyway. Just a change of scenery will be so welcome and i hope to be able to spend a bit of time sitting outdoors enjoying the sea views, even if wrapped up like a mummy!

Work: also i have been summonsed to a meeting by my employer again to discuss my ongoing sickness absense (now over two and a half years!). It will be just after my holiday. I wonder if they are going to give me the final shove this time. I have a Union rep coming with me as usual so we will see what happens…

Anniversary: It is also now the TEN YEAR anniversary of when i became ill. I have not been dwelling on it too much as i have too much else to preoccupy me but i think it is affecting my mood a bit too. I said to my partner when she came up to bed a couple of nights ago:

“i think it is ten years today that i got ill”

she said “oh i didn’t realise, if i had i would’ve brought a sparkler up to bed!”

I thought this was a funny reaction and it made me laugh.

ME/CFS Awareness

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