Saturday, 12 December 2009

Cream Crackered

Absolutely shattered but feeling fairly triumphant. All my work projects went well and winding down for Christmas now as work closes for 2 weeks at Christmas. The house is relatively prepared already too! First time in many years that we've been so organised. Hoping to avoid the usual pre-xmas stress this year. Feeling tired but on the whole I have definitely been getting stronger this year. Seem to be over the worst of the university induced relapse. Fingers crossed things will keep on an even keel for a while.

Looking forward to the up-coming festivities. Some amusing things about working where I do is the crazy things that can happen. Volunteers bring their pet dogs in with them sometimes. I opened the back office door and out jumped a young spaniel leaping round the main office rushing past everyone who tried to catch him. Said dog ran up the stairs around all the rooms up there and back down again until I managed to hook its lead on in a rather deft manoeuvre (if I say so myself) and find his owner (who had gone to make a drink). There was also an atmosphere of carry-on this week too. Whilst preparing for an event which required providing jugs of water there was much laughter over the fact a colleague announced that she had the 'big jugs'. On the same day another colleague stated that his 'little knob fell off' (the drawers). Stupid and immature to laugh at such things but it does make the working day easier to have a giggle.

A friend came to stay last weekend which was really nice and I dragged her along to the museum's Christmas weekend event, which she thoroughly enjoyed and even wants to come back for the next event. Nice to show people my work, I've become quite proud of it so I like it when other people like the place too. It is a crazily chaotic place to work but I love it all the same. I still worry about things ALL the time but am getting better at coping with pressure again now and to control my rampant self-doubt and perfectionism.

Sunday, 6 December 2009

Things on the Internet to Cheer Yourself Up.

I am sure I am not the only person with M.E who is thanking the stars for the internet. A constant source of entertainment for people who for one reason or another are stuck at home with little to do, or little ability to 'do'. Here are some of my faves:

Posted by Stephen Fry on Twitter: I simply love this website!

Mildly ammusing:

One of my all time favourite moments from the glory days of Phil and Fern. I rarely watch This Morning, if ever, but always watched the funny bits on youtube:

Obviously youtube can be an endless source of merriment and musical delights.

A good comedy site is: you can also watch new versions of Walliams and Lucas's "rock profiles"

A bit random but available on youtube is Adam and Joe's "Bobby Calypso" an unusual tribute to DeNiro:

My latest guilty pleasure on tv (apart from come dine with me) is total wipeout. If you've not seen it look it up. Energetic people flinging themselves about is surprisingly watchable in a "can't not look" way. Here is a big red balls compilation off youtube:


Thursday, 3 December 2009

I will survive!

PHEW My working week is over. I survived! Has been really busy. Organising an evening event for the museum, going into a local primary school for outreach work and attending training days in Leeds. I was absolutely shattered Wednesday night after the training and slept for about 14 hours. Today I went into work late (which they don't mind me doing thank goodness) so had a good rest. The hard work paid off today as I discovered myself and the project I am working on got a mention in an article in the local paper. Great for my evaluations etc. My "event" is on Monday evening so until then I am certain to be fretting about it but I've done everything I can to make it a success so have to keep telling myself that. Going to make sure I get plenty of rest and relaxation over the weekend. I cannot hold a decent conversation let alone host an event when tired so I need to be well rested.

I find having been out of work so long has made me worry about everything! I had no confidence about being able to do a good job. It is slowly coming back though and realistically I know I am doing great work I'm just still a little insecure and unsure of myself. If I'm tired all my positivity sinks and my rationality flies out the window too. Muscles and Brain seem to grind to a halt but the positive side is that so far I am just about coping with being back in work. Most importantly I am enjoying it too, despite the stress.

Monday, 30 November 2009

Running on Empty

I am really enjoying my job at the moment, I get to work with such a huge range of lovely, interesting people but really feeling like I'm running on empty. Mentally work has done me the world of good and I feel much more enthusiastic about life and am so glad to be back in employment. However as anyone with m.e knows, you can't always make your body do the things your mind wants it to. I have loads of training and upcoming projects at the moment but am getting really stressed out by the exhaustion it's causing. I look in my diary with apprehension at the moment as I know I'm pushing myself to my current limits. This week is particularly busy so fingers crossed I'll manage to cope with it all.

Sunday, 29 November 2009

Been Busy! (and tired)

It's been a while so just going to do a quick update. Still working and enjoying my job even though I still find it hard to keep going. Learning to balance things a bit more at the moment. Still not managed to clean out my car. Still trying to sort out the mass of junk that has accumulated in my bedroom. Finally posted my DLA application form and waiting for a response one way or the other. Been training some museum volunteers on how to use blogger so they can contribute to the museums' blog. Had a very good letter from 'working links' apologising for my treatment. It was quite a grovelling apology but written very well and addressed all the points raised in my letter so I was pleased with their response. I am now putting it all behind me. (see complaint letter post - 18th October 09)

Still finding working difficult but am lucky to have a job I love in a wonderful place. I went to London to visit friends last weekend and have struggled all week to recover! Juggled my working hours around a bit this week as was incredibly tired and run down. My body does not cope very well with nights out but I only see my university friends all together once or twice a year so was determined to go. Spent most of the weekend travelling though. Still not really met anyone my own age up north so do miss having friends around. Have been asked to be a bridesmaid in August which is very nice but does leave me with a slight feeling of "always the bridesmaid never the bride". Not really sure how I will meet anyone. I live in a remote rural area and when I'm not working I'm mostly resting so don't really know how to meet people. Most young people seem to leave the area in their twenties so still feel a bit isolated.

On the whole things are going very well, just about coping with life at the moment, am already looking forward to a break over Christmas though! Also looking forward to having family up to stay for Christmas. Get on well with my siblings and grandparents so very much looking forward to it this year. Had the dreaded swine flu jab this week and surprisingly enough it didn't affect me too badly. It did ache a lot for a few days but no more than any other jab and cleared up quite quickly. My normal flu jab was worse. I still have bad days when I get over stressed and exhausted but on the whole things are going well. It's been quite a dramatic year with lots of ups and downs. I hope next year is a little calmer.

Thursday, 12 November 2009

Do What You Can, When You Can

Still adjusting to work, mentally exhausted this week. Don't know about anyone else but when I get tired I find it incredibly difficult to keep anything in perspective and to control my mood. By the end of my working week I'd convinced myself that I was useless and that I was not pulling my weight at work or contributing anything. I think part of my problem is that mentally I am so eager and have so much stuff I want to do, that I know I am capable of, but when my body won't keep up with me I feel like a failure. Looking back on it this evening I realise this simply isn't true but it got to the point where I sent an email to my manager apologising for my tiredness and the fact that I had altered my hours a bit this week to help adjust. I had been told many times that so long as I did my 16 hours a week I could pretty much arrange them to suit my needs but doing this filled me with a sense of failure and guilt! silly I realise. Anyway I had a lovely email in reply basically telling me not to be ridiculous and that they understand, and that I am a highly valued member of staff, whether I believe it or not.

I am now a little embarrassed by this and it even made me cry! It's so hard to stay in control of my own mind when I'm worn out! I need to cut myself some slack I think, it's only my 3rd week of working after 2 years so the fact that it's taking me some time to adjust is understandable. I think I still have a hard time accepting the fact that M.E does stop me doing things that I want to do. If I could I would work every day but I just can't, so need to chill out a bit and let myself settle into it. I spent many years struggling to accept the fact that I have to live a little differently because of my M.E and used to hide it as much as I could, only close friends and family knew how it effected me. I had experienced so much negativity about the illness that now, when people are understanding I don't quite believe it. Maybe after a while I may be able to do more but the only person putting pressure on me at this point is myself!

Saturday, 7 November 2009

Household Tasks

I seriously can't muster the will or the energy to finish my DLA form, it's so long and I can think of better things to do. For starters my car/giant handbag is so full of rubbish I've been meaning to give it a good clean (inside) for weeks. Got as far as parking it near the house so far. Maybe tomorrow. My bed had become an island amongst a sea of mess and clothes in my bedroom, I did manage to tidy that up a bit today. Boring jobs like doing the washing and changing the bed seem to become so much effort! It takes me days to build up to it sometimes. Had a good few days rest before the next Tues-Thurs work days so hopefully I won't be so shattered this week but who can tell. Does anybody else get freezing cold when they're tired? I seem to spend much of my time in about 3 jumpers looking very padded.

Still consciously trying not to let work stress me out too much. It's o new to me now that I have to mentally slap myself for worrying so much about every little thing. I just want things to go well! I'm still at a stage where I'm just pathetically grateful to be working at all and in a job that's flexible and that I enjoy. This seems to make me a bit over eager to please and I am quite hard on myself I think. I'm starting a course of yoga again on Monday, I think gentle yoga does help, especially the relaxation side of it. It's run by my physiotherapist so I know I won't be pushed too far. well that's it for now, sorry if this post is a bit dull but I'm starting to use this blog as a diary now too.

Thursday, 5 November 2009

Working Life Continues

Just finished another week at work. I am loving my job but also still finding it incredibly tiring. So much so that when the boss asked me how I was doing I (without thinking) replied "I'm knackered!" Just as well he knows not to be offended by my un-worklike language. They've been great to me so far and I couldn't ask for a more understanding work place. I still get a bit stressed out by it all but that's more to do with fighting the fatigue than the work itself.

I'm posting a video I made a while back for the museum, I'm working on a story gathering project at the moment working with local families and volunteers. Creating digital photo stories like this one. It's about an original volunteer who whilst taking down and re-building an old manor house, so that it could be preserved at the museum, found the oldest silver spoon in the country!

Sunday, 1 November 2009

Light-hearted Banter

Seeing as so far my blog has been a bit doom and gloom, I thought I would do a light-hearted post. I went to the Museums' Halloween party last night, it was awesome! one of the best halloweens I've ever had. Lots of kids in cool fancy dress, and adults in cool fancy dress too. I got to wear ridiculous ammounts of eyeliner and my fancy mask.

Although I was technically working (serving on the tea and cake stand) I still managed to have a wander round the site and see what was happening. Also managed to scoff a hot dog in a bun, which is always a good thing. I even managed to get over my fear of night-time driving and drove home too. Spent most of today trying to catch up on some sleep, it wasn't a late night but being on my feet for a few hours and then not getting a good nights' sleep left me a bit rubbish today.

Just for fun I'm copying in a hilarious video from youtube that my cousin told me about. Who would have thought binoculars could create such a great version of football?! I often find having a giggle can lift my mood a bit on a bad day. For all those with M.E out there hope this gives you a few minutes of carefree amusement. Enjoy.

Wednesday, 28 October 2009

Back in the World of Work!

Quick post to say that I have started work part-time! It's fantastic to feel part of the world again. My employers have been very understanding about my health and have been telling me not to over do it. I am feeling very lucky to have found a job that is flexible enough to fit in with having M.E. It has been hard this week, after so long out of work/life it's been very tiring and a bit of a shock to the system. I've been working part-time but it feels like full time! Absolutely exhausted today. I have the day off tomorrow to catch up on some energy before Friday. I'm having to be very careful as I'm so tired and starting to feel a bit run down already. The next few weeks are going to be all about pacing myself and adjusting to a new routine.

I get very stressed very easily when tired, I am a terrible perfectionist too which is also exhausting as I'm constantly trying to push myself to do things to an unreachable ideal level. As far as work goes I have had to constantly remind myself that I am able to do my job well and I have to stop myself stressing out about things when I should be relaxing. Easier said than done but I am getting there. My confidence is growing slowly as a result of the projects I am working on. I will keep going and hopefully things will become natural to me and easier to cope with.

Going to spend the next few weeks resting as much as I can between working. If it weren't for my Mum cooking me dinner I probably wouldn't have had the energy to eat properly for the last few days. Thank goodness for understanding parents! I over-did it last weekend which has probably contributed to my exhaustion this week. I went to visit friends and family, I don't get to go out with friends much so it was great to see them and have a night out, but it also left me with very little reserve energy for the week ahead. It's so hard to juggle work and rest! In some ways though work has made me feel better, mentally I'm really enjoying being a part of something again and earning my own money. Even though it isn't enough to support myself on, it's still loads better for my self esteem than being on jobseekers allowance.

I still haven't had any formal responses to my complaint letter to the jobcentre/working links (reproduced in the post below). As there is a postal strike on, I am giving them the benefit of the doubt. I do hope it achieves some good and isn't just dismissed or ignored. I am currently considering applying for a DLA to help with my low income and lack of ability to support myself, I haven't yet mustered the strength to finish filling out the form. It's such a long form and anything to do with benefits instantly stresses me out and depresses me now. I still feel that people at this stage of illness get little or no support. I did meet a very kind person on facebook who has offered to advise me on completing the form which is a big help, as yet I haven't had time or energy to do it though. Hopefully I'll have it done by the end of the week.

Monday, 19 October 2009

"Flexible" New Deal - Working Links Debacle. Treating people like slackers

Below is a complaints letter (rather long as there was A LOT to complain about) which I am sending to the Jobcentre and Working Links people. I was treated to a hideous day which left me utterly exhausted for the rest of the week. The emotional and physical stress left me completely dead on my feet. I sincerely hope nobody else has to go through anything like this!

To Whom It May Concern:

I am writing to complain about the appalling treatment I recently received from the “Flexible New Deal” programme run by Working Links on the 13th of October 2009 at the YMCA Leisure Centre in Scarborough. I am 26 years old, I have two degrees and have suffered from M.E/Chronic Fatigue Syndrome since I was 14, and have a past history of epilepsy.

A few days before, I received a phone call asking me to attend a compulsory workshop in Scarborough (23 miles from my home) as there was not one being run from my local Jobcentre in Malton. I was more than willing to attend this day, and even had some hopes that it would be useful to me. Although I did find the manner in which I was asked to attend quite abrupt and threatening, having been told repeatedly that I would lose my benefits if I did not attend.

Because of my health, early mornings are not easy for me, particularly if I have had a disrupted nights’ sleep, which often happens to people suffering from M.E. I can often wake feeling no more rested than when I went to bed. I arranged for my Mum to drive me to Scarborough as it is not safe for me to drive when very tired and there is no local public transport from my village. I had never been to Scarborough before so wanted to leave in plenty of time, to ensure I found the right building and was not late.

When I arrived there was no reception desk or anybody to let me know if I was in the correct place. I wandered round the building until I found somebody to ask. When I stated that I was there to attend the Working Links induction I was told that there was no Working Links happening that day and I must be there for the Jobcentre’s “Back to Work” session. Although sceptical about this I could only go by what I was told so was directed to wait in the kitchen as they were not ready. The meeting according to my letter was due to start at 9.30am. At about 9.40am we were asked to take a seat in the room provided for the “Back to Work” session. On entering the room and taking a seat I and two other people were told that we were not on the list for that session. We took out our letters, which had been sent to us instructing us about the day and showed them to staff. When the staff saw these letters they were stunned as they were apparently unaware that any Working Links session was supposed to be held that day!

I had made a lot of effort to attend this session, my Mum had to sacrifice her time to take me, and the people supposed to be running it were totally unaware that we were coming.

There were about six of us in total attending the session so we were sent back to the kitchen to wait whilst staff, understandably panicked and rushed to arrange a hastily cobbled together plan for the Working Links session. We did not start the session until about 9.55am.

The letter I had received before attending stated clearly that during the induction we may be asked to discuss “the skills and work related abilities you have and anything that might be stopping you get where you want to be, including medical conditions” I was very keen to do this as, having two degrees already, it is my medical history, and not lack of training that has prevented me gaining employment. However, whenever I attempted to raise the issue I was treated dismissively and it became clear that during the induction we were not allowed to discuss anything other than “the new government rules.” We were expected to blindly obey these rules in order to continue to receive Jobseekers allowance.

We were told that to continue to receive benefits, we would have to be completing 30 hours of work related training and activities per week. I was understandably concerned by this because I am only supposed to be looking for part time work until I am strong enough to increase this. It has been recommended by my GP that I begin with working about 16 hours a week and build up gradually, to avoid having another set-back. When I tried to raise this problem I was aggressively and abruptly told that “those are the rules and if you don’t comply you will lose your benefits.” J**** T****, who was delivering the un-planned seminar, did not want to hear of any problems or issues I may have, and there was an attitude taken towards me which implied I was just finding excuses. No matter how calmly or how many times I tried to clarify certain issues, and ask for advice on my individual needs, I was answered dismissively and very unsympathetically. I was reduced to tears of frustration in the seminar, in front of a room full of strangers, and was made to feel absolutely miserable. I felt I was being treated like a second rate citizen who could not be bothered to find work.

I was at the time of the seminar already doing voluntary work at a local museum and had arranged this for myself with no outside help and have gained a huge amount of work experience. I had for some time tried to organise a work placement through the Job Centre but despite many phone calls and emails, the people who were trying to arrange this (RR of YH Training services Ltd) had ceased to contact me and no work placement ever materialised. Being desirous to work and gain experience I arranged one myself.

During the seminar we were told that in order to comply with the “Flexible New Deal” rules I would have to attend a session in Scarborough once a fortnight. Again this worried me as it is not exactly local or easy for me to get to. When I tried to ask a question about this, discussing my ability to get to Scarborough in relation to my health difficulties, I was again met with an aggressive response and threatened with having my benefits taken away. I live in a rural isolated location and there is no public transport within easy reach (the nearest bus stop being a mile away at least). I was horrified by the prospect of having to get to Scarborough once a fortnight, especially if it was morning appointments as it had been that day. There is no guarantee I would be able to drive myself and could not expect my mother to drive me there and back every time as she had done that day. I only recently passed my driving test (only having taken it recently due to a history of Epilepsy) and cannot drive when tired as it can be dangerous, I suffer cognitive dysfunction and myoclonic jerks due to my M.E. Again I tried to question the sense of forcing me to go to Scarborough once a fortnight when my local Job Centre in Malton allowed me to sign on by post, as according to them the distance from my home was far enough to warrant this. I asked if there were any sessions run nearer to where I was living or if some could be run in the Malton Jobcentre. Again and again I was aggressively answered that I had to attend or I would lose my allowance. J***** T**** at one moment even sarcastically asked “well if you can’t get here, how are you going to get a job?” It was clear she wanted to assume that I was only out of work due to laziness, even though she knew absolutely nothing about my personal history. I spent much of the seminar in tears and felt totally humiliated by her responses to my concerns.

J***** T**** was completely unprepared for the seminar and her behaviour towards me was unprofessional.

The day was physically and emotionally exhausting and I felt ill and drained of all self-esteem. I have battled this illness since I was 14 years old and never once have I given up, I am proud of what I have achieved culminating in gaining my Masters degree. However during the seminar I was treated like a waste of time. I had gone to a lot of effort to prepare for the day and nobody was a bit interested in listening to what I had been doing to find work. It was only after the event that I realised the letter I had received informing me of the day and stating what I should do in preparation was actually signed by J***** T****. It is somewhat confusing that the letter informing us about the seminar was signed by the woman who on the day, claimed to have had no prior knowledge that we were due to attend.

The letter stated in the “what we expect from you” section, that I should: “tell us what you’ve done to find work. It’s easier if you write this down and bring letters from employers and anything else that shows us what kind of jobsearch activity you’re doing so we can be sure you’re getting the right support.” I did this and had prepared copies of my CV, records of jobs applied for locally, records of my voluntary work etc. but on the day J***** T**** was not the least bit interested in any of this and was merely going through the presentation and laying down the rules. The presentation itself heavily implied that we were out of work due to being “happy as we were” and not wanting to find employment.

The rest of the session was spent filling out various forms including basic knowledge tests etc. Even this seemed slightly degrading and we were not given any explanation as to the purpose of these forms, by that time I had lost all my strength and was just trying to fill them in as fast as I could so that I could go home. At one point in the “presentation” an image was put onto the screen which appeared to be some kind of optical illusion. Because of my history of epilepsy and cognitive dysfunction resulting from M.E I found this difficult to look at as such things often make me have involuntary jerks or spasms. When I mentioned this I was impatiently told by J***** T**** “well don’t look at it then”. What was baffling about this episode was that no explanation at all was given as to why we were supposed to be looking at it anyway. It seemed like yet another pointless exercise and, like the rest of the day, an utter waste of time.

The last few years have been a huge struggle for me, and it has been incredibly hard to get myself back on my feet and into a position where I am able to work part-time. I have had little or no help from anyone other than G.P. and my parents and am therefore proud of my achievements. The Working Links session made me feel like an utterly useless member of society. I left in tears, very shaken by the treatment I had received and so exhausted that I forgot the “Working Links” information pack that I had been given. For someone struggling to live with a chronic yet invisible illness the day was detrimental to my health and wellbeing. The effort involved to arrive on time was exhausting and the treatment I received left me in physical pain, emotional exhaustion and despair. The thought of ever returning filled me with dread but I was forced to arrange another appointment before leaving.

I wonder why, once I had explained my situation, I was not referred to the Specialist Disability Employment Programme, which I discovered existed when I looked at the Flexible New Deal information published on the DWP website. This programme’s web page states that: “The aim is to provide a tailored, coherent range of specialist employment services which can respond more flexibly to the individual needs of disabled people”. Surely this may have been a more appropriate programme for me, yet nobody even made me aware of it despite my asking about disability programmes on several occasions both at my local Job Centre and at the Working Links induction? I would also like to quote the Disability Discrimination Act which states that: “it is unlawful for an employer to discriminate against you if you are disabled: by dismissing you, or subjecting you to any other negative treatment”. Perhaps Working Links should refer to this in the future to prevent them subjecting anyone else to the awful treatment I received.

To end on a positive note I can report that the day after the Working Links debacle I received a telephone call from the museum where I volunteer, asking me to begin part time employment with them. I do not want to be positive statistic for Working Links as my employment is nothing to do with their programme but is a result of my own hard work. The Museum that has hired me has, and is, being wonderfully flexible and understanding even though they are under no obligation.

The Jobcentre/Working Links programme were not in the least bit supportive. Part of my joy in hearing that I had secured paid employment was that I would no longer have to be treated like an employment evader by the Job Centre/Flexible New Deal.

On hearing of my ordeal my employers instantly offered to write in support of my case and show their own displeasure that “a hard working and conscientious” person could be treated so badly. Please ensure that this complaint is taken seriously as I do not wish anybody else recovering from, or trying to live with, a chronic illness to be treated the way I was.

Yours Faithfully

Sunday, 11 October 2009

Lonely old ME

I am so bored of having M.E. I had to move home because of it which meant moving far away from all my friends. I now have very little social life and some days it'd just be nice to be able to meet up with friends or spend an evening out instead of sitting at home watching TV and getting depressed. It is worse these days as I am making progress and recovering well. The downside to recovery is that now, I am often well enough to go out and do something, but due to my social isolation I have nowhere to go or nobody to go with. Things can never be straightforward can they?

Even though towards the end of my university studies (before I had to take a year off due to my health, and finish my degree from home) at least I always had good friends around. I was lucky to have a very good friend and housemate who was always very supportive and excellent at making me laugh and cheering me up. Even at times when I was never leaving the house, I still saw friends and had some fun (involving sitting on the sofa and being silly mostly). That is something that I really miss. M.E has dominated my life in so many ways its just a shame that now I am in a good phase again it has cost me my social connections, and I have very little means of meeting anyone my own age living where I do. I hope things change and that one day I will be able to move out of the parental home and support myself, and make more friends locally but its proving to be a very very slow and difficult mission.

I have been getting myself out and doing some voluntary work at a local museum, with the hope of eventually getting some part-time paid employment there, but even that does not offer many social options. Most people there are older than me and do not need a needy 26 year old on their hands. I am feeling a little bit demoralised once more by the effect M.E has had on my life. I often feel that because I am so isolated from the world, I am going to waste and nobody knows that I am here!

Friday, 9 October 2009

A Hopeful Day and a Wasteful Day

As I am sure anyone suffering from M.E knows, new research has discovered a possible cause/common factor in those suffering from the disease. I won't go into this too much as more information than I can provide can be found online and in other M.E websites. It is promising news though, that break-through's may finally be being made, and excellent to see that this has become national and international news. The findings were on the front page of today's Independent. I will put one link for anyone reading this who wants to know more - The Whittemore Peterson Institute who conducted the research have a useful Q and A section on their website all about the XMRV virus which is a possible cause of M.E/Chronic fatigue syndrome. You can also donate straight to them to continue their important work.

I would get tested right now if I could (if only out of curiosity).

Other news of my M.E life, aside from the above excitement, is that I've had a typically frustrating and exhausting week of dealing with the incompetence of the Jobcentre. I requested information a long time ago as to whether there were any training courses available that perhaps I could attend whilst biding my time as an unemployed person. I have two degrees so was only looking for a basic computer/Microsoft office course or something to make it easier to get an office admin job. I was met with a non-commital answer which led me to the eventual conclusion that despite all the government spiel about a "new deal" to get people back to work, and to offer lots of exciting new options for the unemployed it was just more empty words. Once again any support on offer seemed irrelevant to my case/situation. However I was told that once I had been unemployed for more than 6 months I could contact a local college, based in the nearest large town, to get some free "work focused training." I was given a phone number for the college and told to call them.

Pathetically hopeful about this, partly for the chance to meet some people and get out the house, I rang the college to make an appointment to arrange said training. After several confused phone calls involving being hung-up on by accident, and met with confusion over who to refer me to within the college,
I was also told that I should not have been calling them direct as it should have been the jobcentre arranging it. I did finally manage to arrange an actual appointment to "discuss options." As anyone with M.E knows, making an hour long journey to keep an appointment is in itself tiring at best, and exhausting at worst. I am still recovering from a recent cold so I was already having a rough day. Despite this, I arrived at the college and met the person who was to discuss the "work focused training" with me. However (and I am not making this up!), he literally sat me down for a minute or so and asked me about myself etc, he then 'ummed and 'ahhed and told me that basically, the college were no longer running subsidised courses through the Jobcentre. Those few that were still running were all full! I didn't even get to look at courses or discuss attending any. He did have the grace to apologise for this and admitted that my being there was a complete waste of time.

Once again the Jobcentre/powers that be have completely let me down and failed to take into account my individual needs. Why was I sent on an hour long journey to a college that had absolutely nothing to offer me?! Why could the college not have told me over the phone what they told me in person? Why did the Jobcentre refer me to a college that was no longer supplying any Jobcentre related courses? When I asked why I wasn't told over the phone of the problems/lack of courses running the college representative replied that it was the Jobcentre's responsibility. Talk about a lack of communication in the system! All this sadly resulting in a waste of my precious energy, not to mention leaving me once more feeling depressed and hopeless. The whole tiring day resulted in nothing productive whatsoever, I am so annoyed I may write a formal letter of complaint to the Jobcentre regarding this most recent incident. As usual there just seems to be nowhere for me to go for a little help.

Tuesday, 6 October 2009

I'm struggling a bit today, been a bit wobbly. I have just felt disgruntled and exhausted all day. Went to check out a local museum but broke out in a huge hot sweat and achy legs when I tried to walk about a bit, also spacial awareness becomes a challenge and i bumped into the edge of things a fair bit today. Had to stop for a sit-down and then had a long sleep. The trouble is I woke feeling completely unrefreshed and the same or worse than before. Some days it just goes like that. I Think I may have over done it a bit in the last few days, had a lot going on. Its so hard to pace yourself when you are recovering as if you feel OK you obviously want to get as much done as possible, but if you throw yourself in too fast you go straight back to being knackered and achy again. I tend to get muscle pains and spasms, difficulty concentrating or having conversation, sensitivity to light, blobs in front of my eyes and a general feeling of being heavy and having to lug my own body about as if it were a dead weight. Keeping it short and sweet today so that's all.

Monday, 5 October 2009

My Incapacity Benefit Medical

Although at the time I tried for the sake of my own sanity to blank out the experience I'd had in my incapacity benefit medical assessment I now think I should set down in words how disgusted I am/was by the whole thing. I've had a lot of experience with unsympathetic and dismissive doctors in my time but this one beat them all. Even now I am trying hard to write this sensibly and not rant and rave but when you have been treated so badly its hard to keep ones cool. I was literally made to feel like a waste of time and a dosser who just didn't want to, or was too lazy to work. For anyone that knows me this is the exact opposite of what I am like, I have always wanted to work and support myself and it frustrates me on a daily basis that I can't.

I am currently well enough to look for part time work (see posts below for the frustrations of this) but at the time of the assessment there was no way I could, and had been signed off for at least 6 months by my own GP. However in the assessment I was interrogated and asked if I could walk up the stairs of my house, bend my knees, and clench my fists, all of which I could do at the time but how this had any relevance to me being able to work for a day or even for more than a few hours at a time I don't know. My parents came with me for moral support and they agreed with my opinion that as soon as the doctor looked at me he had a hint of almost sarcastic scepticism about him.

The subsequent medical report made by this doctor concluded I was not incapable of work, based on a ticking of boxes style examination that had no consideration of my individual needs and condition. I answered everything honestly and openly and tried to make it clear that I did not see incapacity benefit as a long term option for me I just needed some help financially whilst I got back on my feet after my burn-out. I was completely dismissed and all supporting evidence submitted by my own doctors and GP was also dismissed. A quote from the report made by the incapacity benefit appeals dept stated that "the capability assessment examination is carried out to determine functional ability. In this way it is entirely different from the usual type of clinical examination that a doctor carries out." As far as I could see this served to mean that they could disregard all evidence to the contrary and base their report on whether I could in a short period of time (during the interview/interrogation) move about and answer questions. If this constitutes an ability to work then I would love for them to have found me some work that I could have done! A further comment in the report stated that: "The decision maker [who took away my benefit], when considering the points in the areas of disagreement, preferred the assessment by the examining doctor (...) because it was based on the observations made during the examination and the clinical findings" i.e based on a brief meeting with me that allowed them to ignore all evidence from my own doctors who had seen me regularly.

The whole thing left me shaken and miserable and my parents also felt frustrated with nowhere else to turn. Once again I felt that there was no place for me to fit into the world. Due to my struggle to recover I was deemed not ill enough to qualify for even the most basic support (all I had been getting from incapacity benefits was national insurance credits anyway!) I worry about my future as I have no national insurance, no pension and no social links to the world. I am currently able to work but finding employment suitable for me has so far proved impossible, but I am still looking! surely there must be a place for me somewhere?

Sunday, 4 October 2009

HELP! I'm falling between the edges

As a brief extension of the post below I thought I would do a quick mention of the fact that as I am a recovering ME patient, very very lucky in the fact I am relatively active compared to most, I have come up against a whole new set of issues. There is no help for people at this stage of the illness either! I am able to look for work part time (see posts below) but instead of being helped to reintegrate myself into society and the world of work I am constantly hitting yet more brick walls. There should surely be some kind of scheme in existence to help those like me struggling to get their independence back, to get back into work, and have equal opportunity to do so, but all I am told is that there is nothing suitable for me. I feel like I've fallen between the cracks of society and am currently bobbing along with my head barely above the water.

I live in a rural isolated location at my parents house as due to the position I am in, I am totally unable to financially support myself. The dream of moving to my own place or house sharing again seems a very long way off. Financially I have nothing, less than nothing in fact. I have lived with this illness since I was 14 so have never really had the chance to work enough to save up and support myself. I have been in and out of work through my years of study but have only ever been able to earn just enough to keep myself fed and housed with nothing left over, and often had to borrow/be given rent money by my parents (before I had to move home with them after a relapse). I have never been independent despite working to my very limits. I am SO lucky to have parents who support me but living where I do I have no friends around and no social contact, it can be very lonely. I want to work part time as much for the social side of things as for the financial.

I don't know of any provision in society for people like me, who can only work part time, yet have their illness dismissed constantly as being "not severe enough." I've worked bloody hard to get where I am now, and it has not been easy, but I honestly don't know where I'm supposed to go from here. I can't move out and support myself until I have suitable work, but there is no suitable work (where I live anyway) so my chances of ever having a social life or a job are slim indeed. Why is there no help or support for recoverers? Equal opportunities acts do not seem to be relevant to people in this position and we are left to feel like a burden on our families and to feel useless with no place in the world. As far as slowly recovering from ME is concerned, it seems to me you're damned if you do, and damned if you don't.

Jobseekers Allowance, benefits of job seeking

Unlike many people with ME I am currently able to be looking for part-time work. I have over the last 2 years since my complete burn out been slowly but surely getting back on my feet. However even if you are lucky enough to be in this situation there is still little or no help available. I still have to have long sleeps most days to stay well so this makes finding paid employment which fits in with having ME almost impossible. When my incapacity benefit was taken away (at a time when I could not work) I went to citizens advice to seek help. They informed me that due to the government/benefits department unwillingness to acknowledge ME as the debilitating illness it is, there was no point in putting myself through the horribly stressful appeal process. I even had a letter of support from my local MP but citizens advice informed me that the benefits department would have no interest whatsoever in it. By this time I was so depressed by the treatment I'd already received I did not have the strength to fight them any more. The Citizens advice bureau did however come up with an alternative and they told me that if I registered for jobseekers allowance with the provision of only being able to work part-time due to my health I would actually receive more money than I had been getting on incapacity anyway.

I decided to go with this option and have been receiving jobseekers allowance for nearly a year now. However I have tried to be pro-active in seeking work now I am more healthy but have had little or no help from anyone to do this. I picked up a leaflet at the jobcentre about helping people with illness or disability back into work. This leaflet said all the right things but when it came to it, was just another dead end. I made an appointment as instructed by the leaflet to meet with the relevant person at the jobcentre yet was told that none of the options applied to me as it was more focussed on helping people with "sever disability" (as if ME is not severe) or to help people keep their jobs once they had one! The only option available was to register my interest on the placement scheme they ran in collaboration with an outside organisation. I did this about 6 months ago and have to date received no placement and the people supposed to be organising it have stopped communicating with me altogether. I complained of this to the jobcentre and was met with rolled eyes and the answer that basically there was nothing they could do. I am going to contact the placement organisation again to seek an update but don't expect to receive a reply.

Obviously yet more dismissive treatment is a depressing symptom of the way people with ME, no matter what stage they're at, are treated in society. It seems there is just no place for it and nowhere to go for help or support. I currently do some voluntary work at a local museum and have been enjoying it, just to get out when I can is a big boost to my esteem. If I was able to arrange such a placement at a museum myself, why weren't the people who are paid to arrange one able to? I think all it comes down to seems to be that if you have ME then you are on your own as far as trying to get your life back together is concerned. Another ridiculous side of things became apparent when I received a terse letter from the jobcentre interrogating me about my voluntary work so they could make sure it wasn't affecting my "actively seeking work" status. I was being pro-active and getting myself some work experience but was made to feel like I was somehow breaking the rules even though there were/are absolutely no jobs available to me.

Another set-back typical of the way people like me are treated was when, having been ill after a minor surgery, my jobseekers allowance was taken away with no notice given to me or no prior warning. I received 2 letters in one day from the benefits dept both saying different things, when I made yet another lengthy call to them (being on hold for 20 mins goes with the territory) I was then told that my benefit had stopped as when I was ill I had not been "actively seeking work"! This was so ridiculous it was almost funny, not only had I had surgery but had then been ill for 3 days after and to top it all off I was punished for it. Having made a complaint to the benefit people my benefits were restored (grudgingly) and back pay was given to me, I never expected any kind of apology despite one nice man telling me on the phone that my benefit should never have been stopped. Merely dealing with the benefits department can make a person with ME (or any other debilitating illness) feel worse and cause them huge ammounts of undue stress and fatigue. During my incapacity battles and jobseekers battles I have become so stressed out by it I have been in tears, there seems to be no niche in society for people suffering from ME.

Saturday, 3 October 2009

Cognitive Behavioural Therapy - My Experience

In my perusal of the internet ME blogs I have noticed a lot of mixed responses to Cognitive Behavioural Therapy. I have been through a course of this treatment (out of sheer desperation more than a belief it would help). Like most ME sufferers I get extremely angry by the assumption that it is purely psychological and not a physical condition. I was sceptical about what I would meet with at my first appointment. However I am glad to say that my therapist was very understanding and sympathetic, rather than having therapy to "cure" me of ME it was focused
on helping me to live with it. Over the years I had become very bitter about the lack of treatment or even advice I'd received and after years of struggling alone I had become completely demoralised by my situation. The CBT course helped me to realise that some of the tactics and defence mechanisms I had developed as a young teenager to cope with ME no longer worked for me as an adult so I had to learn to develop new techniques. Also due to being diagnosed at a time where I was young and still growing the negative treatment I had received at the hands of various GP's and other doctors had affected me deeply and made me embarrassed about having ME and ashamed that I could not be self sufficient and function "normally". I was, as a teenager, embarassed by having this "joke" illness, the very first time I looked up ME after being diagnosed I found it listed as "yuppie flu" and scoffed at.

Basically I can say that I would recommend CBT if you are lucky like me and get a therapist who is not trying to convince you that its "all in your head" giving it a try did pay off for me. Although it was sometimes exhausting and emotional over all it has helped me come to terms with the fact that I have an illness and its unlikely to ever go away completely. I did learn some new methods of coping and learnt not to compare myself negatively to "normal" people. Although I still feel angry by the treatment ME sufferers receive and angry that it has had such a dominant role in
my life I have accepted that I can live a good life despite it. My life may just have to be a little different. I am currently in a good position, getting over the last big relapse and able to function well and work part time but I know not to push myself too far. I still have bad weeks but no longer beat myself up about it, if I need to spend a week in bed to have a good month, that's what I'll do as its better than burning out completely. CBT has helped me develop some helpful strategies for living with ME and I would recommend it to other sufferers especially those who are coming out of a bad phase and need to be careful not to do anything that might encourage another set back. Set backs do happen whatever you do but if you know your own limits and accept them it can help to avoid bad relapses.

Friday, 2 October 2009

Welcome to my blog

Below is the rather long story of my life with ME so far. I am at a stage where I feel in Limbo as there does not seem to be a niche for people like me in society. I am living in a quite rural isolated area due to my illness causing me to move back to my parents house as I was unable to support myself. I am interested to know how many other poeple have had to do the same due to the total lack of support for people with ME. I am recovering but its a slow process and as I am only able to work part-time I cannot/have not yet found a job. I have been on jobseekers allowance for 6 months with no prospect of finding a job suitable to my needs. Its a catch 22 situation as I am currently well enough to work part time but my location is a problem, yet without work and an income I have no way of moving somewhere more suitable. Read my story below to see how I ended up here.

This is not how I thought things would turn out

At 14 I was diagnosed by a hospital consultant with having chronic fatigue syndrome/M.E it was a relief at the time as I knew there was something wrong but did not know what. However at that age I had no conception of how much it would impact my life, despite the fact that shortly after the official diagnosis I had to leave mainstream education. I attended a pupil referral unit which was able to successfully guide me through taking my GCSEs and achieving the grades I knew I was capable of. My mainstream school had given up on me when my illness caused me to miss, or not be able to concentrate in lessons and had predicted that I would fail. Later I struggled with my A-levels through college yet despite taking an extra year I passed with good grades and was able to go to the university I had chosen. By now I was receiving no guidance on how to manage or cope with my chronic fatigue and I had come up against so many negative reactions from doctors that I decided to try and put it to the back of my mind and get along on my own as best I could, I tended to hide my illness as much as I could.

I had good months and bad months and was plagued by the low immunity side of the illness, often getting minor infections and health problems as well as the other symptoms. However for the first year and a half at university I was able to cope well and was still hesitant to ask for advice from doctors due to the sceptical reaction I usually received. I took a turn for the worse toward the end of my second year at university and was forced to ask for help from the doctor. However the only thing to come from this is that I was prescribed anti-depressants. I had become depressed but not for no reason. Struggling to cope with the constant tiredness and aches and pains had got me down but I did not feel I was clinically depressed. However this was all the doctor would offer me so eventually I agreed to try. Over the next 4 years I was prescribed ever increasing doses of anti-depressants with no real positive effect, it was masking the real issue that I could not function as a normal person and was unable to do the things I wished to do. My grades dropped dramatically in my final year of my BA degree as I began to lose the battle against the fatigue and my ability to cope with the stress of living with ME was at rock bottom. I was not sleeping well and was not able to sleep at nights despite all efforts such as denying myself any sleep in the day eventually my sleep pattern became hugely erratic and I became almost nocturnal. I would not make it to seminars that were in the mornings and many months were spent not eating or sleeping properly due to the illness, I awoke so tired that I wouldn’t manage to make my own breakfast.

After my BA I realised that I was not living normally yet had no clue how to help myself and the only advice I received was to stay on or try new anti-depressants I tried to press my belief that I was not clinically depressed and that I was concerned that it was the chronic fatigue causing my problems. This was usually met with no reaction or dismissed. I was recommended that cognitive behavioural therapy would help yet when I was eager to pursue this I was told by the GP that there was not even any point in being put on the waiting list as it was over a 2 year wait. This was very disheartening at the time as I was getting desperate yet could not afford private treatment as I was a student and my illness had already caused me to rely heavily on money from my parents as I could not work and study full time. I knew that I could not work full time after my BA so decided to stay on at university to study for a Masters degree. This is not an ideal reason for continuing study but I enjoyed studying and knew I had no chance of holding down a full time job. I stayed at the same university for my Masters degree and was accepted onto the course. Shortly into the course I switched to studying part time partly as I was getting worse and was not coping with the work. However I told most people who asked why I switched that I was intending to work part time whilst I studied. This was true I was eager to earn my own money I had had many brief part time jobs previously and thought I would get some basic office experience, although looking back I think I was still struggling to admit to myself and others that the ME was getting the better of me.

I got a job working as an admin assistant in one of the university offices, I worked part time 2-3 days a week yet after 3 or 4 months I began to run out of all energy and become ill more often so eventually I had to leave this job as I was often ringing in sick and not attending work. Things became steadily worse and eventually I burnt out completely both physically and mentally. I had to intermit from my degree for a year and move home to North Yorkshire with my parents. I was extremely blessed to have supportive parents and to find a good GP who immediately started me on an ME treatment programme and took my illness very seriously. It has been nearly 2 years since my return home and I have been making very very slow yet steady progress. However I am still not yet at a level where I can support myself or hold down a full time job. Things are improving but it is a slow process which if rushed could send me back to square one. My own doctors and physio therapists have advised me not to think about full time work as I am not yet healthy enough and I have also completed my dissertation for my Masters degree whilst here. However now I am an adult living with this illness I have come up against a plethora of new issues one of the main ones being financial assistance. I applied for incapacity benefit as recommended to do so by my GP however this was made incredibly difficult and caused me a great deal of stress. After three months of delay I finally was told I would be receiving a small amount of benefit which I was extremely grateful for as I worried constantly about my lack of independence and reliance on my parents for aid. I am 26 years old and do not enjoy being reliant on my parents still for money, and everything else!

However a few weeks after receiving my confirmed benefit I was sent for a very interrogatory assessment by a doctor working for the benefit department, as I expected I immediately got the impression that M.E/chronic fatigue syndrome was not taken seriously by this assessor and after a few weeks I received a letter saying I had not qualified for the benefits and that they were to be stopped. This was devastating to me as it left me feeling helpless and powerless to do anything about it. I defy anyone to believe that a 26 year old would enjoy living the life I am now living with no independence and being isolated from any social life due to the remote location of my parent’s home and having left the area in which all my friends live. The questions put to me in the assessment had no bearing at all on the illness I am suffering from. For example I was asked if I could clench my fists and bend my knees, which I can certainly do yet this has no effect on my ability to keep going for a whole day or be able to physically cope with a full working day. I was also asked if I could dress myself or prepare a meal for myself, again I am able to do this but this has no effect on my ability to maintain enough energy and mental concentration to hold down a job. I am not a lazy person and I do not enjoy my current situation I would love to be living an independent life and starting a career but I am just not able to at present. I am hopeful that in another twelve months I will be able to and am working hard to achieve this through regular doctor check ups and physio-therapy to improve my strength and stamina.

I think it is a disgrace that my benefits were stopped at a time when I was completely unable to work a full day. The assessment I received was completely dismissive of my type of illness. It has been a major set-back to me and I had to make the decision whether or not to face a lengthy and stressful appeal process. I ended up in tears many times during the initial application so I was not looking forward to going through the whole process again. People in my situation are made to feel pathetic and not taken seriously by the benefit process or the government. It may currently be a policy to get one million people off incapacity benefit but when this targets those genuinely in need who have an illness that is particularly hard to define and often displays no obvious outer signs it is disgusting. ME is debilitating and incredibly hard to live with and is made all the more difficult when met with scorn and dismissal by those who are supposed to help. My benefits were only a small amount anyway but gave me that hint of independence that I needed to feel a part of society. If it wasn’t for the kindness of my parents I fully believe I would be homeless at this point. I find it extremely disturbing that people with this illness are not offered any help in coping or managing the disease. It took years for people to acknowledge the existence of it yet it has still not been accepted as the serious and life-altering illness that it is. I feel I am lucky as some people struggle to leave their beds or homes, with the help of my current GP I am improving and am on the road to recovery after ten years of struggle yet at every turn the 'powers that be' in society seem to belittle my illness and be openly hostile to giving me any support at all. I have lost years of my life to this illness and just need a small amount of support to get my life back on track yet I am denied this. I also know I am far from being the only one in this position!

I hope that making people aware of this situation may have some effect on the way people are treated. I am desperate to achieve a normal life and support myself one day as my friends and siblings are able to. I am also desperate for some help to achieve this. Thank you for taking the time to read this and please let me know if you have any response or advice to give me.