Tuesday, 3 March 2015

February's update...

Hello everyone, it's been a month since I last updated this so I thought I'd give you a (fairly) brief update. Some of you will have seen my most recent vlog which still managed to be 8 minutes long! If you want to view that then just click the following link: https://www.youtube.com/watch?v=EcVZ5ViJA-c

It's nice to have such great support from new friends I've made over the past year, a couple of years ago I felt like no-one listened to me but I've been introduced to some of the nicest people I've ever known, in fact THE nicest! It doesn't always matter how often you see someone in the flesh as long as it's genuine. Anyway, back to the update...

I'm quite foggy so I get my dates and times mixed up a lot but I'll do the best I can...


The first thing that comes to mind is the dreaded WRAG group. I mentioned this briefly in the video link above but if you haven't seen that then I'll explain here the situation.

When applying for Employment Support Allowance (which I really don't like doing as I want to be able to work as soon as possible) I had to attend a medical a couple of years back. Obviously I failed as a lot of you will know how irrelevant it is to an illness like ME. This is because they don't take into consideration a lot of things like the after effect to overexertion and how the illness fluctuates a lot and isn't 'visible'. Anyway, I had to attend a tribunal the following December (just over a year ago now) and I won the appeal. When you win the appeal you are placed into 1 of 2 groups. The first 1 is the support group and the second one is WRAG. With WRAG (Work Related Assessment Group) it is mandatory that you have appointments with your adviser who keeps a check on your progress and tries to get you back into work.

The above is fair enough but when my health had worsened, my adviser was still pressurizing me to attend workshops and courses. My Occupational Therapist at the hospital even wrote my adviser a letter explaining how I'm unable to attend anything over an hour long as it was likely to worsen my symptoms (fatigue/pain/brain fog amongst many others). The problem is that my adviser just ignored this letter of support from my OT and continued to pressurize me into attending something so that "she could show her boss that she'd done something with me". She actually said that, which basically means she'll do anything to tick the boxes and doesn't care less about a person's health.

I then had a meeting with my local MP who actually wrote a letter to WRAG before my next appointment which was a couple of weeks ago. This letter was ignored too! In fact as I'm writing this my MP STILL hasn't had a response from them. In short, the letter was asking them why they were trying to send me on these courses when they had a medical report in front of them. I had another letter from my MP last week saying he was still waiting for a reply. It beggars belief... And to add insult to injury, this particular course I was being sent on was a 'Psychological Motivation Course'. Something which is totally irrelevant to me...

So it's an ongoing situation and I'm sure some of you can relate to this.


 The second thing that comes to mind is mixed emotions with stress being the biggest one. This is over the past couple of weeks in particular, again I explain in the video about this.

Recently, I've had a few animals who have passed away in quick succession. I've been having very bad luck with my rats. There have been over 10 tumours within the past half year on 6 rats. I'm down to 2 now and 1 of them has cancer which is growing by the day. My giant rabbit Harvey also passed away a couple of weeks ago. It's been quite upsetting as with an illness like this, having animals is a great comfort to me.

Also, I mention that there's been a situation going on which has been on my mind a lot but I wouldn't elaborate. Some of you will know what I'm talking about but the reason I'm mentioning this is because it's added to the stress I've already been experiencing recently. It's a very difficult one and I continue to ask my Christian friends to pray about this as that's the only answer at the moment.

I've also come off my pain relief tablets which I didn't think were working but maybe they were as the pain has been almost unbearable the past few days. It's added to the fatigue as well and I literally cannot do as much as I could even a few weeks ago. I'm fighting against it but sometimes your body just drops and you can't move, I hate being in bed but that's the only place I can get some sort of relief at the moment. I've been managing to get out of the house but it's difficult and public places are a daunting prospect with the big crowds, even the slightest noises can make me feel ill so it's a difficult one.

My OT wants to discharge me next time I see her which is a worry as my GP is of little support to me. I applied to join another surgery near to me but it was deemed not local enough to accept me. My OT is the only person who provides me with support letters but she did say that she's referring me to a pain clinic. The only problem is I'd have to attend for full days which is not possible at the moment.

On a positive note, I got to go and see my biggest musical inspirations ever LIVE. Adam Lambert & Queen were amazing, it took a lot out of me and I couldn't even look at the stage in parts due to the flashing lights but I still thoroughly enjoyed it.

Walking is a massive struggle and I struggled with it that night, the furthest I've walked for months is only a matter of yards. I'm not using my crutch/stick as much but I still can't walk a further distance than I could. I've not even been into my town center for the past year because there's nowhere to park. I'm in the process of applying for blue badge but these things take time.

It's becoming harder to do anything, 1 bit of exercise is too much which upsets me, even a little singing practice. I have a singing teacher but I can't practice half of the time which frustrates me a lot. There's so much I want to do. It's been very difficult getting my latest book done, I planned to have it out a while ago but it's just not been possible. I feel like half of my body is working but the other half has just totally given up and it's a case of balancing the 2 out!

I think I've covered most things here and I hope it isn't too long for you! I'll be sure to come back if I've missed anything out! Thank you all for reading...

Barry x


  1. Dear Barry- my heart aches for you- and all the others who are struggling with the ESA decisions. I'm disgusted that your OP is pushing you so she can look better re her job!! It's disgraceful and I hope your MP can get somewhere with those involved. Sorry you lost Harvey. Pets are such a treasure when we're so ill. Am concerned that you've cut out your pain killers and would advise you to try them again. If they don't work tell your GP and ask for something else. Constant pain is debilitating and depressing. Am pleased you were able to go to the Gig and enjoyed it- but like everything else- you'll have to pay for it. Post Exertional Malaise is one of the big problems for us. I can understand you feeling frustrated. I guess we all get frustrated with not being able to do what we want to or have to pay for what we try to do. As a long term sufferer [I'm 71 and was diagnosed in 1988 after many years of suffering] I'd advise you not to push yourself- it will just make things worse. Just reading about all you've done or trying to do makes me wonder if you really understand the cause of your tiredness and suggest you have a read of http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure which might help xxx

    1. Hi Mary, so sorry I wasn't notified of your comment before! Thank you although it's not my OT pushing me, it's my adviser at WRAG group. I am thinking of going back on the pain killers, it's been a bit better this week although not good today. Thanks Mary, I'll have a good read. I understand mainly (I think) but it's hard to accept when there's so much I want to do xxx

  2. Dear Barry, I left a comment on google+, but I would like to add how truly sorry I am that this has happened to someone so young. Your doctor does not sound supportive at all and if possible you should find a new one. You seem very mature for your age. Your OT sounds supportive and she may be able to help you further, as they are connected to the system. I would advise that you not push yourself as this can lead to worsensing of your condition. The body needs energy to heal itself and if you push, the energy is going there, not to healing. The handicap badge is a good idea, if even you don't want to use it , do! Then you have that energy for something else .I am glad you enjoyed the concert, sometimes the sacrifice is worth it. Take care and God bless.

    1. Thanks Sharon, again I've not been notified of these comments so sorry it's late. Thank you, I'm hoping maybe my OT can give me more advice. God bless you too. :)

  3. Also, Barry, I think the painkillers are important and will give you a more functional life. You may have to try different ones to get the right fit.Nothing is forever, and you will know when the time is right to come off.xxx

    1. Thank you, I'm considering going back on them or trying some new ones. I'll mention it to my OT who i see soon xxx