Brain Fog Blessing

Can that title be true? Can brain fog ever be a blessing?

Thanks to a huge effort on Growler’s part my application to renew my Disability Living Allowance (DLA) is finally completed and being posted today.  A few weeks past my award ended but it’s finally finished.  Brain fog, cognitive, memory, sequencing and communication problems have made it impossible for me to complete such a complex application on my own.

Brain fog also means I can’t quite believe that it’s now over 2 years since I first applied for DLA.  Or that I was diagnosed with ME/CFS 7 months before that.  Or that I’ve actually been ill enough for it to affect me day to day for at least a year before that.

My brain fog almost cushions me from the stark reality that I’ve been ill, every single day, for years.

I was going over some of my blog posts from the last time I applied for DLA.  The posts from 2 years ago seem to have much the same themes as I live and struggle with now.  How I live with them has changed a little, but the landscape looks much the same.

Some months after I got diagnosed a couple of people with ME said “the first year is the hardest”.  It seemed a little damning.  I didn’t want to be ill beyond a year for goodness sake!  And here I am a couple of years on reflecting that they were probably right.  Except the first year of being ill, AND then the first year of being diagnosed whilst having become so ill I couldn’t work or do anything very much, were both equally as hard.

I’m wondering whether the reason I don’t blog as much about life with chronic illness is that I feel I’ve said it all before.  I’m just revisiting old ground.  But I have to remind myself (and you) that you’re never stood in the same place twice in life, because whilst you can go back to the familiar you and the world have all changed a little since you were last there.

Maybe blogging about life with chronic illness does get kind of same-y after a couple of years – but that’s surely a reflection of what life is really like?

I got told this week that the way I deal with my illness is an inspiration (which from the person who said it was meant wholheartedly and not in a patronising way at all).  I’ve been told similiar things by others.

The thing is we who live with conditions like ME/CFS come to learn that you just have to do the best you can with what you’ve got.  It’s not about being brave or being amazing – it’s a lot to do with not really having much of a choice.  You have to kind of get on with it, or give up.

I’m pretty sure that if I didn’t have Growler to keep me on an even keel this would be a different story.  There would be a lot more wailing and gnashing of teeth.  So maybe I do in fact do a good job of living as positively as I’m able. Hmmm.

So anyway. Here’s to revisiting the same old ground on new days and trying to be chronically happy along the way.

Being Believed Continues

I saw my Lovely GP this week after my medication got flagged for review, meaning it’s been a year since I last saw her.  Nothing much has changed in the last year, in fact in the last 2 years.

Seeing my Lovely GP, who is supportive about ME/CFS, usually leaves me feeling re-assured but a bit depressed because there’s nothing much she can do to help.  She prescribes to help control symptoms where she can, she offers referrals if I want them but doesn’t press anything on me.  But I leave with a sense that there’s nothing much anyone can do to help no matter how much they want to.

I read something on the internet about how many GP’s now go through the motions with Chronic Fatigue Syndrome patients.  They say the right things because the guidelines say they have to treat it as a physical illness. but privately they think their patients are just crazy or malingerers.  The advice being don’t let the patient know this because it only fuels the fantasy they are ill.

That’s pretty awful stuff to wrestle with.  Because even if my GP makes the right noises how do I know they are really invested in my care?

Well I plucked up the courage to ask my Lovely GP this time around if she had heard of  LDN (which is for another post) and if she would ever be willing to prescribe “off licence”.  She said she hadn’t (but could I give her any information) and they don’t usually do that (very sorry and all that).

I tell her a quick summary about LDN, give her a piece of paper with some urls on it and she flicks through one of her books with medications it in.  She says she will certainly take a look at the info and she will present a case to the lady in charge of deciding these things and see what she says – although she wasn’t too hopeful it would be a yes she was promising to try and get an answer quickly for me.

Exciting! My Lovely GP is willing to try even though some doctors would now be writing “difficult patient” on my file.

So, I ask, if the answer is no to prescribing it off licence would she have any objection if I were to seek a prescription for it from a specialist GP or private doctor. No problem whatsoever, absolutely, go for it.  Anything I think might help she is for me trying.

We reviewed my exisiting meds and I’m going to try upping my amitriptyline to 30mg as I’m needing more pain killers and migraine meds recently.

I told her we were in the process of re-applying for DLA (Disability Living Allowance)and could I drop a copy of our form in again for when she needs to write her report to them. Behind you 100% she says. Anything I can do to help with that she says.

OK, so while I’m here … my early blood test results have been bugging me.  Because my red cell count was high consistently but I was told it was “my normal”. Could anything have been missed?  She looks at the results and says very apologetically that’s it’s very moderate and there’s nothing really there of clinical interest. Sorry.

I’m getting answers!  I’m not getting diagnosed with something treatable but I’m getting answers.

So as I’m about to leave Growler asks if I’m want to mention XMRV.  What’s that then she asks.  She hasn’t seen the news. So I give her a quick summary about the research findings.  And she gets excited. A retrovirus?  How interesting, let me write this down. 

This is another reason for asking about LDN, because it sort of strengthens the case – it being effective with HIV (another retrovirus).  Except she says this at the same time as me.

Wouldn’t it be wonderful, she says, if it were found to be the cause?

Any doubts I ever had about whether my GP really believes in ME/CFS, or whether she just humours me, were set aside during this ten minute appointment.

I saw her willingness to help, but her being bound by the rules.  I saw her interest raised with news of a medication she hadn’t heard about and with research with significant findings.  I saw her keen to go read more and find if there was a way to help her patient, to help me.

I also had a few more hints that she has personal experience of ME in her close family – which goes a long way to explaining why she’s supportive, open minded and just a little frustrated with ME/CFS.

Having no doubts about her belief in my illness and her belief in the challenges it presents to me day in and day out, means a great deal to me.  Also I now know I need never be afraid to print out an article of interest into new research or treatment to share with her.  She’s not going to give me a black mark as a difficult patient.

Her support has given me a blue badge to use disabled parking, a Disability Living Allowance, medication for symptom control, re-assurance, knowledge, a diagnosis (which no-one else would give me) and hope.

I once read that the best gift you can ever give to someone is to believe in them.

I thought it just meant to believe in their potential, but I’m learning it reaches much further than that.  And it is indeed a wonderful gift to receive.

XMRV … I Dare To Hope

 I dare to hope … XMRV … Researchers *might* have found the key to ME/CFS

http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html

“The study, published in the journal Science, shows that the virus, called murine leukaemia virus-related virus (XMRV), was found in 68 of 101 patients from around the US with chronic fatigue syndrome. This compared with just eight of 218 healthy “controls” drawn at random from the same parts of the US, the scientists said.”

The research seems to be holding up. Hillary Johnson (Oslers Web) says this is what we have waited all these years to hear.

“The world has flipped. It took one human generation, but it turned right side up today… A nova has appeared in the constellation.”

The Whittemore Peterson Institute published it’s research in Science magazine yesterday and are continuing with their findings. 

“This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.”

A blood test is being developed. They are mapping treatments to this retroviral infections (many drug therapies already exist that could treat it).

Gulp.

XMRV (and XAND) could be the key.  It could be a secondary disorder, a passenger, another engima in ME/CFS.  But it could be the key, the cause.

It’s early days.  More research is needed. But the ripple of excitement from this particular finding is striking.

The Only Sunflower

My mom helped me plant sunflower seeds in the garden back in early July.  Although a few sprouted only one made it to be a big strong giant sunflower.  Yesterday it opened into full bloom.

Even though I planted hafl a dozen sunflower seeds and my mom did the rest I remember how exhausted I felt afterwards.  I had to ask her to fetch me a glass of water as I couldn’t make it to the house myself even though I was the host.  Something about this bright golden flower makes all that seem insignificant.  I grew this.

The one and only sunflower to grow and bloom in my garden this year. Sep 2009.

Close up with bees.

See this super large

A Great Honour

Today is the civil marriage ceremony of my best friend to a really lovely guy. It will be an intimate ceremony – just them, her parents, us and 2 other friends.  Growler and I have been asked to be witnesses.  I am so honoured to be asked and so excited for her.  She’s happy and about to be wed.

In a few days they will be off to Canada to see the groom’s family and celebrate with them and then the proper wedding is in September when they will be having a handfasting ceremony surrounded by friends and family.

When I sometimes feel I have so little to offer because of my ME/CFS limitations it’s extra special that our friendship endures and thrives.  And that part of what strengthened it happened since I got ill.  That listening, talking and caring is much valued.  That despite the changes in my our lives we still connect.

One of the readings at today’s ceremony is taken from a book of poetry I bought her 3 years ago to try and help with the nasty break up with her ex-boyfriend, not long after my own wedding and them talking about getting engaged.  Three years later she’s marrying a wonderful bloke who loves her and brings out the best in her and her him.

It’s a great honour to be asked to the ceremony.  Especially to have the honour of being a legal witness.  But the best part if seeing this new and happy chapter in her life unfold.

Relaxed But Not Exactly Refreshed

Last week was a stay at home holiday for me and Growler.  A “staycation” as my American frined Nina informs me.  Some British friends suggest if anything it should be a “stoliday”.

It was great to have a break from the normal routines, spend time with Growler and to go out and see different things.  Plus I had my own comfey bed and home comforts (and medications and suppliments) at hand.

So here’s what I did on my stay at home holiday …

Growler had the Friday and the following week off.  On the Friday we went to a nearby farm shop and bought the lemon curd I am partial too. Then we went to a nearby garden centre, had a look around the giftware and cards before a bit of cake in the cafe.

That first weekend we rested.  Well if we had travelled then we’d have done that.

Monday we travelled into Birmingham and had a picnic in the Botanical Gardens.  Unfortunately there was also a fun day for “underpriveledged children” and the place was heaving with kids in school parties and a loud sound system with children orientated disco music.  Ah well.  We were warned about the noise by the lady on the ticket desk.

So we left and headed to the Sea Life centre (aquarium).  Which had less people but an even louder PA system with new age piped music.  I’ve never been deafened by new age mystical music and sea sound effects before so that was quite an experience. 

At the risk of moaning … access within the building was alright but getting through the damn doors was a different matter.  And when we found the otters there were half a dozen members of staff stood in front of the enclosure.  We were told we had missed the feeding and if we didn’t want to queue for the 4d cinema to (more or less) move along. So I saw one otter for all of 2 seconds. Grump.

Even so it was good to out and about and with my lovely Growler.  And we made a good start on what was to become major sugar overload during the next week.

Tuesday we went all the way to Chester Zoo.  Turns out it’s not that far to go.  I was prepared for school parties but there were a lot of teenagers old enough to be let loose on their own (in packs of course) but not old enough to not be irritating.  But once we moved from the main concourse where the cafes were it got a little less busy. 

We saw lions, elephants, giraffes, spectacled bears (didn’t get a photo though), meerkats, jaguars, bats which flew around out heads in a special indoor darkened enclosure, penguins, seals and lots more.

After a long day on Tuesday we kept it local and low key on Wednesday.  Starting with a trip to a local garden centre restaraunt for a full english breakfast (oh boy were we full!) we then went into Lichfield and took a look around the cathedral.  We’ve lived here at least 5 years and never actually been and looken around it properly before.  I lit a candle for … well … everyone really. 

Then we had lovely cake in the cathedral coffee shop before visiting the gift shop via Erasmus the bunny rabbit.  He’s the rabbit that lives in the gardens of Erasmus Darmin’s house (the house I don’t think is wheelchair accessible – nothing on their web site about access – so we didn’t go in the house).

On the way home we went into the local library to rent some films on DVD.  I love libraries and I miss being able to pop in.  The smell of libraries is wonderful to me.  We spent out afternoon back home watching one of the DVD’s.

Thursday we popped into Marks and Spencers and I bought a new top for my friend’s wedding which is this weekend.  Then onto the cinema to see the new Harry Potter film. 

It was my first experience of a cinema using the wheelchair to make things “easier” but it was a bit of a nightmare.  The trailers were showing by the time we got in and we were both carrying snacks.  Poor Growler was trying to move me into a wheelchair space in the dark with snacks in his hands.  The usher waved his torch around for 3 seconds, stood in the dark and watched for another 15 seconds and then buggered off. 

It was kind of a stressful start.  And again although it’s level and ramped access inside the building the doors were not friendly and the disabled toilet door had one of those closing mechanisms that made the door super heavy.  But we enjoyed the film and the snacks very much.

By Friday I was really tired but not wanting to waste any opportunity to go out.  So we drove to Ironbridge.  It was raining so hard and I was so knackered we never got out of the car.  We wound our way back to a garden centre some way away and had lovely cake before heading home.

The weekend was spent watching the British Open Golf on the telly and generally lazing.

As you can tell I did a LOT more on my week off than I do normally and I was really starting to struggle by the weekend.  So I’m not exactly refreshed and rested.  But the change of scene, the freedom to go out and about, and being able to hang out with my Growler made it a great week off.  I find myself this week ready to tackle my to do list with renewed enthusiasm.  The challenge is to remember to make resting part of my routine again.

Not having to travel to, or cope with the changes of different accommodation was a real help I think to make the most of the holiday.  Although it’s very nice to have different walls to look at and someone else whose done the cleaning when you do stay away.