Going to an appeal tribunal? Do your homework. Look at the criteria. My Fibro did not fit any of them which is why I gained zero points. The saving grace is exceptional circumstances.
Pain and fatigue are not criteria considered but they are very debilitating.
For my permitted work I have retrained twice. First as a gardener, (before I had the diagnosis of Fibromyalgia). While working, with adrenalin flowing I looked perfectly fit but 3-4 hours work resulted in 18 hours in bed due to fatigue and pain. I became more and more ill and had to give in. I then retrained as a dog trainer. This is less physically demanding and I am still physically active and again nobody would guess I had a problem while I am teaching. I now know how to pace myself. Because pain causes interrrupted sleep I need to sleep/ rest at night and all morning. I then have an easy afternoon including a dog walk and a rest before working for 2-4 hours in the evening. Shopping, housework and other necessary activities tire me as much as work. If I ignore the fatigue and push myself for a week or more the payback is needing to sleep and rest for up to 14 days afterwards. As a result of living alone I have no free time, I work or sleep. When I am unable to pace myself fibrofog makes thinking and speaking difficult. I may also feel as if I am about to faint (previously diagnosed as a panic attack now recognised as my body telling I must stop and sleep). If I continue to push myself I can become tearful.
At the Appeal Tribunal
I provided documentary evidence of the work I have done and how it made me feel. I photocopied my diaries inwhich I recorded what I was doing and how I was feeling. I photocopied my GP's medical notes. I copied the sheets I filled in to help me with pacing provided by the pain clinic psychologist. I copied my certificates to show that I was getting re-qualified. I was critical of the system which paid no attention to pain and fatigue or a diagnosis from a hospital consultant.
At my assessment due to stress and having to get up to be at a 12noon appointment, fibrofog was full on. I was asked how old I was, I couldn't think so I gave my date of birth! I was asked about my medication, again I couldn't think so had to get it out of my bag. I was asked to clarify my evidence which I did, just confirming what was in my documentary evidence without having the copy open in front of me. Legally they should only have considered how I was on the day of my original assessment a year previously. I pointed out that that was unfair as fibro is a variable condition and I had provided evidence to show how each time I built up my work hours I became ill. I was asked what an employer would need to help me. I replied that after 3-4 hours I would need a room with a bed so I could go to sleep! I added that no employer would provide this so this is why I was doing self employed permitted work.
I agreed with the judge that according to the set criteria I earned zero points but pointed out that because of my illness I could not work full time. As a result of my oral and documentary evidence the tribunal doctor and judge found in my favour citing exceptional circumstances and that to work would damage my mental and physical health. I am very grateful that they listened to me. On this occasion I thank God that fibro fog descended making it difficult to find words which I always find upsetting, - but in this instance it helped.
I have been giving 2 years before I need to be seen again. I will continue to try to build up my work but the pressure is now off and if I feel ill I do not need to push myself. I found the appeal tribunal to be considerate and fair. I was given a written copy of the judgement immediately.
The next day I received a letter telling me that all benefit was stopped as I had been on ESA for a year - the appeal tribunal was the day after the date of this letter! Due to the bank holiday I could not contact the office for 3 days and it took 35 minutes of holding and listening to a ringing telephone before I was put through to speak to someone...
Do your homework,
Provide documentary evidence so if fibrofog descends you do not lose out.
Point out how pain and fatigue affect you, don't try to fit in with the criteria by exagerating aspects which aren't big problems.
Be totally honest, pain and fatigue are debilitating. Fibromyalgia is a debilitating illness.
Speak for yourself, if fibro fog descends this can work in your favour.
Exceptional circumstances are the way to go.