Specialist Update

Before I moved away from my lovely wonderful GP he wanted to make sure I was on the right path to being treated, to improving. He had tried referring me to a rheumatologist, but it had proved fruitless in terms of treatment for M.E.. So we sought an actual M.E. specialist, and we found a clinic about an hour away from where I was living. The Chronic Fatigue Clinic at the George Eliot hospital in Nuneaton.

I had an appointment with them in March. It upset me. The doctor I saw told me that I had been ill for so long that it was unlikely that there would be anything they could do for me. I came away feeling as if I was being blamed for not being referred to them sooner. I wasn't given any advice or treatment, so didn't think it would go any further.

However, a month or so later I was called in for an adreno-cortisol test. I was under extreme stress at the time, so the doctor conducting the test expected my results to be very strange, and that he would need to repeat the test. I received a letter through the post informing me that they were normal. I was once again disappointed. I know it is strange to hope that something is wrong, but as far as I'm concerned, if there is something wrong they can treat it, which means there are less things wrong with me that are being untreated.

I was then surprised to be called in for a second appointment with one of the doctors from the clinic. The appointment was last Friday. The letter didn't tell me why I was going, so I didn't know what to expect. My appointment was with Dr Patel.

Dr Patel, at the moment, is my hero. He disclosed to my partner and I that when I had gone in for the adreno cortisol tests they had also performed a number of blood tests. He looks at the results of these tests in conjunction with one another. For myself he found that while both my thyroid levels are within the normal range, one is high, and one is low; that in itself is not normal. It means that one thyroid hormone is not being converted properly into the other. As such he has changed my thyroid medication to try and overcome this problem. He also found that my Vitamin B12 levels are low, so he has prescribed B12 injections.

I would like to explain something here. Where I have described on M.E. groups what Dr Patel has so far done, the reaction I have mostly had is "My GP did that ages ago!" or "That's how I was diagnosed too!". I have been ill and diagnosed since 2002; he is not re-diagnosing me. The way he does these blood tests is not what our GPs do. He is not running routine bloods for a start, but also the way he looks at the results is different. Most of our GPs do not go through the results and explain them to us. He looks at how they work together. We all know that different parts of the body affect each other; similarly if one thing is wrong in the blood tests it will be affecting other things. My thyroid levels being the perfect and most simple example. He is also familiar with the fact that people with M.E. have absorption issues, which is why he prescribed Vitamin B12 injections. I am already taking multi-vitamins and minerals at the advice of my previous GP because he suspected I had low B12 and Vitamin D, but obviously I still have low Vitamin B12 despite taking 100% of the recommended daily allowance on a daily basis.

One thing the rheumatologist did do when I saw her was to prescribe me with Tramadol for pain. I have found since seeing her that it doesn't only help me with the pain, but it also takes away that extremely heavy feeling we get in our limbs, and clears my head so that I can actually think clearly. Well, since moving GP, my new doctor keeps reducing the dose of Tramadol. He doesn't like the drug, because it's addictive (and because he didn't prescribe it for me). So I asked Dr Patel if he could sort this problem out for me. He is going to; he has re-prescribed it for me at the dose the rheumatologist set, and is going to ask my current GP not to reduce it again. (I don't think this will have any affect on my GP though to be honest).

I also asked Dr Patel if I might try Gabapentin for sleep, as I've heard from a few people with M.E. that it gives a natural sleep, unlike sleeping tablets which turn us into zombies. He has indeed prescribed me with Gabapentin, and he mentioned that it is recommended for M.E..

I have come away from him very happy. I am determined to do exactly as he has said. I will be sticking to this medication regime religiously. I have absolutely no right to complain about being ill if I am not doing as the doctors who understand the illness tell me to.

Frustrations: The mother of an M.E. sufferer

When I invited people to share their frustrations about M.E. with me, one of my friends came forward to tell me that her son has M.E.. I hadn't previously known this. This is what she had to say...

ME can be inherited........! that awful realisation that you’ve passed something awful on to your child!

I’ve never actually been diagnosed with ME – I’ve suffered with most of the symptoms though since I was 19. My own doctor doesn’t like labels – and after being diagnosed (by another doctor) with Fibromyalgia ten years ago (at 34), the need to have it confirmed lessened. Friends with ME tell me I have it, and I have to say I think I probably do too, but a lot of the meds they use are the same, and the extreme exhaustion of both is very similar – so it matters less to have the ME label.

I know there’s nothing I could do to stop it, but knowing that my son (then 16 and just finishing his exams) had contracted the horrible illness that blighted my adult life and that he got it because I’d had it was very hard to deal with. Interestingly (!), his father has Fibromyalgia too..... so my poor son had no chance to avoid this pain – a lot of people suffer with both ME and Fibromyalgia.

My son is now 21, he’s been through college, a year of Uni and even parenthood whilst suffering with this horrid illness. College and Uni were hard – but they knew about his illness and gave him extra time to complete things – I had to help a lot too, especially with the written work; so most of his coursework was a joint venture – we joke that I too have a Diploma in Modern Music (or at least, the written part – I can’t play a single musical instrument!). Parenthood – well, that’s exhausting at the best of times – adding ME into the mix just adds a whole new dimension – we all help when we can.

The practical side of the illness (or at least the support of it) is straight forward – you know his energy has its limits and don’t expect too much. You do what you can to help, you make allowances and adjust.

Emotionally though it’s harder – maybe because I can truly empathise – but trying to keep him going when I’m struggling to keep my own ‘emotional’ head above water is so draining. There are certainly days when I will do everything to keep him going at a cost to my own health – not because he asks it, but because I’m his mum and that’s my job (ok, silly maybe, but it’s how I feel).

He doesn’t like people knowing he has ME – in fact it’s only his really close friends that do know. He feels that somehow he’s failed by having the illness – that they will think less of him (they don’t, I can assure you). But as his mum, that’s really hard to deal with – I’m pleased, of course, that he doesn’t use it as an excuse – but sometimes I wish he wouldn’t be so hard on himself – and would allow people to care and make allowances.

He’s my son – and I would do anything to take this terrible illness away – but we have to live with it, him and I – we don’t have a choice, do we?

Frustrations; how long have you got?

When I asked one of my friends with M.E. what her frustrations were, this was her response:

"Have you got 3 weeks to read it lol? Its the most frustrating illness I've ever come across. You can't plan, you feel like you're living on luck, you're in pain every day, getting benefits to which you should be entitled to is luck of the draw, you fight to get better which makes you feel worse, you feel useless when you can't even make a meal or string a sentence together. If you have a 'good day' (which is a term I don't like as I am rarely symptom free) its frustrating to try and not be 'normal' as you know you'll pay for it over the next few days. You worry about what people think if they see you out doing something most others take for granted like shopping as to other people you look 'normal' and don't look ill. Its difficult for people to understand how you feel...and if one more person says "Oh, I get tired too..I just....blah blah blah...you should try that" I'll possibly use some of my precious energy in punching them...if the pain in my arms allow it!!!"

500,000 to lose DLA

Those of us who have been watching the tide turn are well aware of what switching from DLA to PIP will do. Benefit reform has been brought about partly because the government has painted a picture of those on benefits as being scroungers, malingerers, people who generally don't want to make an honest living ... the lowest of the low.

Public perception is that the benefits system is being reformed because of benefit fraud. Yet, the actual statistic for Disability Living Allowance fraud most recently released was 0.5%. Old Joe Blogs is going to look at the governments statement that 500,000 will lose DLA, and believe that 500,000 people have been claiming fraudulently. As such, I'd like to do a little maths with you.

DLA fraud = 0.5%

In Joe Blogs mind, 0.5% = 500,000

In order for that to be the case, the total number of people claiming DLA would be 100,000,000.

So, dear Mr Blogs, before you jump to any conclusions, please think about the reality of more people than make up the population of the UK being able to claim DLA. The government is not just targeting benefit fraud, it is targeting people who are genuinely sick and disabled, and taking away the little amount of money they rely on.

DLA is supposed to enable people to live a life contributing to society, whether that be by working, or simply by being able to shop in their local stores instead of online. By removing so many people from DLA (or PIP) the system will crumble. People who have relied on Mobility cars will no longer be able to get to work. People who were able to go into their local high street throughout the day will no longer be able to do so ... more shops will close!

It's a small minded way of recovering a tiny amount of money, that could be so easily regained if the big mouths, further up the ladder, actually paid their taxes.

Frustrations; my friend has M.E.

I invited people to write for me, what their frustrations are regarding M.E.. My first response is from a lady whose best friend has M.E.

"My Frustrations on having a friend with M.E - By Annie

I get annoyed that I think they can do everything I want them to when I want them to do it, only for them to say they can't.

I get upset that by them trying to do what I want them to do, they then get exhausted and need to recover before I can get them to do anything else.

I feel guilty that they feel they have to prepare themselves mentally and physically just to be able to cope with me being with them.

I feel like they don't want me around when I have any bugs because they know they can't cope with any extra illness.

I see a friend who is talented and clever but unable to have the strength to show the world what they could do because a 'good day' is just not good enough to cope.

I feel upset that a good person is suffering and there is no way of having an energy donation like a blood doner could donate blood

I wish that other people, who like me originally had considered the side effects of M.E or CFS as just being a state of mind from people with no routine in their life, could see that it is medical and no one can just snap out of it just by setting an alarm clock for the same time each day."

The frustrations of M.E.!

Most of my closest friends have M.E.. Many of my acquaintances have M.E.. I invited everyone I know to write me a piece about their frustrations with M.E..

I also invite you to write your frustrations. You might have M.E., or you may be friends, the lover, or a parents of someone with M.E., of you may have read about it. Whatever your relation to the condition, I do not mind, I would like to hear and share your frustrations about the condition.

What you write need not be long, yet there is no limit either. You can be named, or remain anonymous. I will however correct English that I consider to be hard to understand.

Please email me if you would like to be included: olana.voljeti@gmail.com

You know what can cure M.E.?

When you have M.E. everyone thinks they know how to cure you. Some people are saying it because they care, but others do it because they just like to look better than you, more knowledgeable than you in your own condition, then dismiss you as a kook when you say their methods have been tried and failed. They seem to think they know better than doctors a lot of the time.

Debbie Deboo created this beautiful, gentle, video approaching this fact. Give it a watch, and be mindful. For example, if M.E. could be cured with diet, do you really think we would not follow that diet? Would we really choose to remain ill if it was so simple?

There are drugs being developed and tested that might work. I am hopeful for the future.