Friday, June 19, 2015

A blast from the past

A long long time since posting anything here. Life has been too busy and my health just doesn't seem to have picked up properly since a slump about a year ago. I have had to stop as much 'screen time' as possible and I am trying a new regime of homeopathic treatment which was recommended by a friend in the USA who I knew from College 40 years ago. She has benefited from this treatment massively and we share a similar medical history in that she also had Epstein Barr Syndrome when she was about 17.

However, in the never ending quest to find that special treatment that will 'fix me', one thing has recently knocked me for six. We are downsizing --- clearing out all sorts of stuff from way, way back. In the past few days I came across my mother's diaries. Some of the entries are indecipherable to me as they are written in shorthand but some are all too clear and what emerges is a record of someone who was probably living with fibromyalgia or M.E.

I have always had a suspicion that M.E. was the cause of my mother's constant ill health but now I have a sort of record in black and white. There are also entries which mention me being ill as far back as the 1970s. One entry from the early 80s, describes how ill I had felt for weeks and how I went to the GP and then felt fobbed off with blood tests which came back with 'normal' results. There are references to the pain I felt in my legs,in my arms, looking tired and thin, having difficulties with perfumes, food, eczema.

I knew all this of course but, whilst living a life with children and the career I once had, details get forgotten. I can't remember any of that last episode with the blood tests.

Reading those diary entries makes me wonder if there's any real hope. Do I have any realistic hope of ever, ever being well -- a state that I cannot remember, a state which is in many ways meaningless to me and not part of my reality. Reading those words makes me doubt the future because it makes me wonder if the story I have been telling myself and others for years --- that I was originally well but had glandular fever when I was 4 and then another bout of the same at 16/17 --- is true. Was I ever really well or is there something in my genetic make-up that means I was bound to become unwell and never have the same energy as other people, always destined to have the aches and pains of fibro, always destined to have more and more sensitivities to chemicals, food and so on and so on and so on ?  Is there any hope at all?

9 comments:

Lee Lee said...

Wow, that must be truly fascinating reading your Mums journals ... as well as an emotional roller coaster I am sure ... finding out more about her and yourself too. Thanks for sharing this, it actually mirrors my experience with my own Mum .. she has been unwell since I was a kid and I am sure it is in somewway ME related ..

LLxx

Reading the Signs said...

That's quite something, Cusp - coming across this evidence from the past. As for hope - one always has it, even if just for the possibility that things can get better.

Good luck with the downsizing. It's a huge task, sorting through all one's stuff. I tackled some of it but cheated and put a lot of boxes into storage - and there they wait!

xx

Sue Jackson said...

So lovely to hear from you, Cusp! Though I'm sorry to hear you are still struggling so much.

As for your question, I don't think they are mutually exclusive. It sounds like you inherited the genetic tendency for ME/CFS from your mom (as my boys did from me), but that doesn't mean it is hopeless. Given your history with EBV, you are a perfect candidate for antivirals and just the type of patient for whom they tend to help the most. I know it is hard to find a doctor in the UK to prescribe them, but I know there are some there...and perhaps as the overwhelming scientific evidence for the role of viruses in ME/CFS continues to build, it will become a more accepted practice there in the near future. I can ask around to find out which doctor UK patients saw who prescribed antivirals.

Anyway, I mostly wanted to say hello and let you know that I am thinking of you and have missed your wonderful sense of humor!

Sue

Sue Jackson said...

Hi again, Cusp -

I asked around a bit and got a lot of "can;t find any doctor in the UK willing to treat ME with anything!" comments, but did have one positive response. Don;t know if this is anywhere near you but thought I'd pass it along:

" Dr Bansal Immunologist at St Helier hospital near Sutton has given acyclovir to adults I know. "

Acyclovir is one of several antivirals that target herpes-family viruses like EBV and HH-6, common culprits in ME.

Worth a try!

Thinking of you -

Sue

Cusp said...

Thank you all for your comments.

Seems that there are several other people about who have history of M.E. in their family.

Thanks for researching all that Sue. I was given Acyclovir when I had shingles about 23 years ago and it was a wonder. I felt great for about 4 months (and it knocked out the shingles before it could really get hold of me). Sutton is quite a long way from here but not impossible.

Sue Jackson said...

Cusp -

Have two more possibilities for you...

Dr. Myhill is the top ME doc in the UK - very well-known (I'd forgotten about her before) and treats according to the latest research, not NICE guidelines.

Here's the scoop:

"Dr Myhill is in wales but she does loads by post and phone....
Breakspear Clinic is in Hertfordshire... Have been put off by mixed experienced there- but am sure there are good people"

Apparently, Breakspear has an ME clinic that goes beyond GET and CBT, too.

There is more and more scientific evidence behind the use of antivirals for ME - that plus your past experience points to this being something that might help you if you might be able to get to one of these docs.

Still thinking of you!

Sue

rachelcreative said...

Hi Cusp. That sounds like some overwhelming insight you've gained and I can't imagine how you must be feeling trying to process it and all it means. It's also coming on the back of a challenging and exhausting time for you, which I can only imagine is making it much harder to process.

I could give you some words of optimism, but really, for now I just wanted you to know that I heard what you said and I'm thinking of you x

~Elise said...

Hello Madame! So sad to hear you aren't doing even well enough to be online. I'm actually thinking of deactivating too. I, too, believe what Sue said about all the great evidence doing out of the latest studies for antivirals. So... hang in there and let's keep hoping against hope together. xXOo

~Elise said...

PS God how I miss you!!