Please understand that you don't understand

'Oh, I know what that's like; my friend used to have it!'

Just one of many phrases that tends to upset me. Particularly if followed by something along the lines of 'He used to go to all the protests!'. Of course I don't actually say anything on the occasions that people say something like that to me. I know that people are trying to relate, and trying to be nice, but they don't realise that they are actually being rather tactless. So, I'm asking you to understand that you just don't understand.

I know that probably sounds very arrogant, but it is not.

Among people who have CFS / M.E., those experienced at least, it is generally understood that even among one another we do not all have the same experiences, we do not all share the same symptoms, we are not all on the same medications; we basically cannot understand each other. But we respect that. When one of us says we are struggling with such and such, we make allowances for it.

I spent this afternoon with Trudie and Bev. The three of us have M.E.. We are all aware that we inevitably struggle with energy levels, and that spending time together will take a toll on our condition. We are aware that Trudie is the worst affected, and Bev the least. But the way in which we are affected varies significantly. When Bev is exhausted she spends hours asleep. When I'm exhausted my entire body starts to ache and tremble. We simply mutually accept that we have different problems, and that we'll express if we are struggling with anything or need help.

So, if you know someone who has M.E., or has had M.E., please understand that that does not automatically mean that you understand me. To be honest, it's highly unlikely that you understood your friend to start with either. Even among one another we struggle immensely to describe the symptoms we go through, and because it changes from hour to hour, day to day, what we described to you yesterday may well not stand today anyway. So I'm asking of you, please, instead of trying to relate to me, or someone you know who has M.E., just take us as you find us. You can't presume, and to some extent you can't prepare.

Please don't misunderstand me. It is not that we seek to be aloof and mysterious; we really honestly do want to be understood. It is horrible having to try and explain what we are going through over and over again, especially when we don't really understand it ourselves. A little patience please.

Respite

Most of the time when I post to my blog I seem to be complaining, either about how bad my health is, or about the benefits system in the UK. I'd like to make a change. I would like to thank Bev and Mark for being wonderful.

Recently I've been feeling extremely down. I've been dealing with a house move I did not want to make, an ex husband messing me around, and health that I just can't get a handle on. I've had some very dangerous thought patterns.

Today .. well, it is 9pm, and I've not been out of bed properly today. My legs hurt. Until about an hour ago I was finding it hard to focus on anything efficiently. And I'm suffering from the M.E. equivalent of labyrinthitis again. But I've spent most of the (waking) day giggling and laughing.

Bev and Mark, and Roger when he passes the room, are a tonic. Mark in particular helps me see the funny side in everything M.E. related. Not just M.E. related, but it's notable for me as I fail to find any of it amusing when I'm alone at home.

Today I've been fed yummy food, given a birthday cake even though my birthday was a month ago, and made to feel relaxed and happy in general.

Thank you Bev & Mark.

M.E. is serious

So many people simply do not comprehend that M.E. is a serious illness. At this time of last year I was severely ill. I was bedbound, my body deteriorating in front of my eyes. I thought I was dying. I have said this to people over the last year, and been met with a mixture of reactions. Many people do not believe it possible to die from M.E.. Mostly people who die from M.E. die from secondary infections, or complications caused because of M.E., (or suicide),  but not actually the M.E. itself ... in cases like mine though, there was nothing else you could put it down to ... and nothing else with which my doctor can explain the consequences I've been struggling with all year. I only personally know of one person who has died from M.E., but that is one too many.

So, for those who don't believe, please visit the following website: ME / CFS Memorial. A snippet:

"Barbara Ramos Gibson, 63, died on May 1, 2006 from complications of CFIDS/ME and fibromyalgia. She was active in Florida trying to make a difference in the way the disease was viewed as well as reaching out to others. She had become so severe that she was unable to walk and she was due to enter a nursing home when her life ended."

Help Brian :(

I simply cannot believe this; it's as if it was the 18th century all over again or something. What is the last thing someone with M.E. needs? To be locked in a psychiatric ward and told that their illness is all in their head. Especially given the recently apology from Norway's government to their M.E. patients. This is apparently what has happened. The link to the forum is in the title above. The story .. below ...

Hi Guys,

PERMISSION TO REPOST

UK ME / POTS patient Brian Nicholson has been sectioned under the mental health act due doctors claiming that his ME / POTS symptoms are a delusion.

I have written to his MP, his solicitor and a consultant in London who diagnosed him with dysautonomia / severe POTS. His MP is a member of the APPG on ME in parliament so hopefully he'll be helpful. The Countess of Mar in the Lords is also aware of his circumstances.

His solicitor has been asked to take the Canadian and International ME  guidelines to the consultant in charge of his care and to ensure that he is up to speed with ME himself.

Devon doctors, UK, have sectioned Brian Nicholson on the grounds that his symptoms of severe ME/POTS are a delusion. Please could folk kindly send him cards and messages of encouragement. If you could visit, that would be great. The address is below.

Thanks, folks,

C.G.

Please can you guys help out by sending Brian cards, notes and letters to cheer him up like we did with Zoe a few years ago? He's down, scared and lonely and could do with knowing there are folks out here that care. It would help him a lot.

Brian is in:
Haytor Ward
Torbay Hospital
Lawes Bridge
Torquay
TQ2 7AA
01803 654917

If anyone is close by and would like to visit him please let me know and I can put you in touch.

Recording Atos Assessments

Don't have the spoons to comment much. This was posted yesterday, in one of the groups I belong to. Useful information for anyone who is approaching an Atos assessment.

"Well guys, I went through my ATOS WCA today. Was in there AN HOUR. Something you should know though - THEY recorded it for me. They've been piloting a recording system in certain areas of the UK.

They screwed me around quite a bit, mainly being unable to tell me their exact recording requirements, messing up appointment days and then having the DWP come down on me to justify it all! Involvement from MP had them get back to me and offer me a date & time at my convenience with an English speaking, British qualified GP they got in from another area especially.

If I can do that, I'm damn sure you can too. ASK if there is a recording pilot in your area or a nearby area and PUSH for it. Involve your MP if you get nowhere - they WILL and DO stonewall you when you try to enquire - either that or the staff at both ATOS & the DWP have no idea what their own rules are. Point is, try & you might just get somewhere. I know it takes a lot of stress & energy but that recording could be your proof at appeal.

They also took the recording equipment from another city especially! When I arrived the reception knew "Oh, you're the one that wants it recorded". Seemed like a bit of a fuss.

Anyway, I just have to stop fretting whilst I await that dreaded brown envelope.

NB: I did note that there were signs dotted about mentioning the "duty of care" they had to staff & clients but remember that the audio from an ATOS recruitment day says that the job is NOT a caring role. So which is it? Just food for thought....."

Inaccessible assessment centres

Someone posted the following on one of the M.E. groups on Facebook earlier. It illustrates beautifully what we are up against:

"I have just posted this as my status. Please feel free to nick it if you wish

This is a true story, please repost this to show what the levels of treatment the UK is currently doling out on the most vulnerable people in our society. It is not an isolated or unusual example either.

A guy is chatting to a gentleman at a bus stop. He is in a wheelchair. He explains that he has just had to bus from Weston-Super-Mare to Bristol for an assessment of his fitness to work. The reason he has had to bus this far, is that the medical assessment centre in Weston-Super-Mare IS NOT WHEELCHAIR ACCESSIBLE. During the medical, the assessor tells the gentleman that he is going to hit his knee with a hammer to test his reflexes. The gentleman insists that this is not going to happen. The assessor (who is allegedly medically qualified) challenges him as to why he will not allow this. The gentleman replies that it is because HE HAS BONE CANCER.

So, bearing in mind this gentleman's condition, and the fact that he would have filled in a long and tedious form outlining the state of his health, the question is WHY ON EARTH WOULD THEY PUT SOMEONE SO SICK THROUGH THIS PROCESS?

And ARE WE GOING TO STAND BY AND LET THIS CONTINUE?"

I know many people will read this and dismiss it, assuming that the system cannot really be that stupid, but honestly, it really is. 

The experience I had a few years ago is not dissimilar. I was called for a medical assessment. I was not actually claiming benefits at the time, but was told to go for it anyway. The assessment centre is over an hour away from here by car. I can never be certain that I would be able to drive that long to get there, then endure the assessment (let alone the waiting room before hand), and drive home again. They sent me a route plan for public transport. The route plan took over three hours, with several bus changes; some of them did not even meet up, buses leaving before the bus I would have been on was supposed to have arrived at the link destination. There is no way that I would be able to undertake such a journey, even on a good day. They refused to perform a home assessment for me, so Ian felt forced to take the day off work and take me to the assessment. The assessment centre does not have a car park. So, people attending the centre must find parking. We had to park approximately ten minutes walk away from the centre. The assessment suite is on the third floor. There is a lift, but you are told when you enter the building that it frequently breaks down and asked if you will be able to use the stairs if this happens. That is obviously part of the assessment. On that occasion I was assessed by a doctor. He was really nice, and sympathetic to my condition. Sadly, a couple of weeks later I was phoned by the assessment centre saying that there were problems with my assessment and that they could not locate the doctor who had assessed me to enquire about them; that I must attend another assessment. Ian refused to take another day off work in order to take me. I therefore received a letter stating that I had lost the benefits I was receiving. I was not receiving any anyway. The entire episode was most perplexing. 

I believe that the Croydon assessment centre has recently been criticised by their local MP for the fact that it is inaccessible. The centre's argument was that if people could get into the building they were fit to work, and if they were able to communicate with people inside the building that they could not enter, they were also fit for work. 

This is the level of victimisation that we're up against. From the government, and agencies that are supposed to be helping us. I despair.

I'm gonna miss my doctor!

So, I went to see my doctor yesterday. It's the first time he's seen me so ill, as usually I cancel appointments rather than force myself out of the house. It's the first time he's actually seen me use the stick too. Usually I'm too embarrassed, but given how ill I am right now I figured I should be completely utterly honest with him. I didn't actually need to say anything; as soon as I walked into his office he knew. I'm not my usual bouncy, positive self at the moment. He knew the right words to express my wanting to end everything too. It alarmed me a little when he said that we have to hit rock bottom before we can go back up though; last time he said that I wasn't as bad as I am now ... so technically, things can get worse.

We talked about my visit to the rheumatologist. He isn't very happy with her recommendations. We're going to try the Amitriptyline, but only for a few days to start with. If it affects me like it did last time, we'll be stopping. He's prescribed the Tramadol as recommended too, but there was another drug she suggested which he has decided we should give a miss. He's not overly keen on the Tramadol either. I've not looked into it, but suspect this may be something to do with my wanting to fall asleep and never wake up again.

He was unhappy that she did not wish to discuss M.E. at all, but understood why she instructed me to not mention it to the physiotherapists when I'm finally referred. He has decided that despite the waiting lists, and the distance, he is going to refer me to the Nuneaton CFS Specialist unit. When I get my appointment I'll just have to beg someone to take me. He's going to see if I can go in privately to shorten my waiting time. And he's going to stay late on Friday to see me, because he wants to be sure I'm ok with the new medications. I'm allowed to stay with the practice for two further weeks after I've moved house. I will miss him.

I hate this. I hate that I am so ill that I have to question myself before being honest with anyone about how bad things are. It is second nature to play things up. When someone asks you how you are they expect you to say 'fine thank you'. If you respond with anything else you tend to receive a strange reaction. Well, I'm not ok. I desperately need help, and have no idea how to get it. So I had to be honest with him.

I made him a bird out of my snotty tissues. I think he was grateful.