Archive for the 'LessonLearnt' Category

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.

DLA Success!

I have been awarded Disability Living Allowance!  I am so happy!

They have given me Lower Rate Mobility and Middle Rate Care allowance.  Plus they have awarded it for 2 years.  Great news.

I am certain this is down to a strong application with lots of additional information, seven supporting letters/statements from family and friends and a great GP who I suspect wrote a spot on report for the DLA decision makers.

I wholeheartedly recommend subscribing to www.benefitsandwork.co.uk to anyone considering applying for DLA.  They also provide advice on Incapacity benefit claims.  Their advice guide is just brilliant – it’s easy to follow, it decodes the ridiculously complex DLA form and it tells you step by step how to give the strongest application you can.  They also left me in no doubt that I qualify and that I should apply.

As well as owing a huge than you to the family and friends who wrote supporting letters and stood by me through this process, and a huge thank you to my GP – I know none of it would have been possible without Growler’s help.  He did all the hard work – extracting from me what I wanted to say, filling in the gaps in my thinking/memory and writing up the 50 plus pages of questions and additional information sheets.

I am so relieved not to have had to have a doctors visit/medical.  The letter says my application, further information and GP’s statement was enough for them to make an award.  I have even received the back dated payments already!  Plus it took them just 2 months from me posting the form for them to make the decision – not too bad by government standards!

Now I just have to decide how to use the money.  Especially as I wasn’t really expecting to get it.  Perhaps a gardener, or a cleaner, or part time P.A. to do errands and little tasks … or to save it towards something bigger … an electric wheelchair, a go slow holiday, an electric bicycle … or practical things like taxi’s to get more independent, supporting my huge vitamin habit, investing in more pyjamas, buying a shower seat … or to invest it for bleak rainy days …

Hmmm. A nice problem to have.  Wonderful in fact.  It IS possible to have CFS and qualify for DLA.

To Chance Going On Your Own Two Legs

Just doing the basics.  Well, not even all of the basics truth be told.  I’m in that foggy world – where fogginess shrouds the brain and the body.  Like walking through thick smoke with the resistance of custard.  Like thinking with a veil between me and the world.

Moment of clarity come and then go.  Moments of energy – having taken hours to arrive – spark out pretty quickly.  I can appear gloomy to those around me – but mainly because my physical output lets me down.  

Growler sees me outwardly normal one moment and sort of spaced out slumped the next and I try to say what is true “Happy on The Inside”.

I went to a funeral on Thursday.  Aside from the easily anticipated emotional aspects – it was the physical exertions that put me in this state.  A 100 metre or so walk from the car and having to stand through the service (the attendance was magnificent but I was too late to ask anyone to give up their seat).  All in all 40 minutes of my feet either standing or walking leaning on Growler for support – legs shaking, then stiff and aching and shaking.

Lesson Learnt: It’s better to use the wheelchair and not have needed it, than to not use it and discover I should have – because by then it’s too late.

No point taking the chance on occasions when I’m not able to dictate the exertion required.

Friday was weary.  Saturday was foggy and exhausted.  Sunday (today) a deeper level of mist and exhaustion.

At least I’m well enough to write this – after an hour in zombie mode I have spark of energy and clarity to use.  I’m not (touch wood) suffering from a lot of pain, or migraines, or IBS flare up, or achey like I can after such exertions.  My limbs are weak (I blow dried my hair on Wednesday ready for the outing on Thursday and my arms are not yet recovered) and I’m bed bound for the lions share of the day.

I’m so glad I was able to go to the funeral and I have to remember that it was worth the price.  And that I learnt next time to just shelve the pride or the worry about causing a fuss with access – and just use the damn wheelchair!

Hours of Work Wasted (mini RANT)

Oh grrr!  I spent hours and hours over the last two days methodically doing some work online … upload, click, copy, paste, click, wait, click, wait, click, etc.

I know my brain doesn’t work so well since developing my illness so I made a list of all the tiny chunks of tasks I needed to do and in what order.  I took my time and I was so pleased to have a couple of days when I was capable of doing such tasks and would get something out of it at the end.

Except … once I was very near the end, checking links and so forth, I discovered the basic assumptions I had been working on were wrong.  I spent 2 days changing this whole site to work in a “better way” only to discover that way sucks.  Only 10% of it is keepable – so I have another 2 days of work to get back to where I was.

What frustrates me most isn’t the loss of the work.  Even the loss of the ‘capable time’ isn’t the worst part.  The thing I hate about it is that I wasn’t sharp enough to test the basic principle at the beginning.  To test it was what I wanted instead of my brain going “oh yer – good idea … la la la …” and forgetting to make sure the basic principle was sound.

There was a time, not so very long ago, when my mind worked in a way that meant every angle would be considered, contemplated and scrutinised before getting stuck into the actual doing of the thing. 

I know I have to get stuck into doing most of the time before I forget what I was about to do 🙂

But, but, but … why isn’t my mind as keen, sharp … erm … I can’t think of a word that means “thinking in a wide and encompassing way”.  Sigh.

It’s not a real angry rant.  It’s just a humph really.  I hoped a blog might help get it off my chest – because I know why and I know it doesn’t really matter.  That I will just get up and do it all again (hopefully properly) when I am able to next.  And that trying to be clever in my current state of health and cognitive function is probably not a sensible thing to do. 

So I think it has helped and I think “Keep It Simple” is the lesson to be learnt here!

CFS and Funerals – A Few Practical Tips

I attended the funeral of a family friend this week and wanted to share some advice about funerals for CFS sufferers.

If you occassionally use a wheelchair to help get around I’d recommend using it to attend a funeral.  I wanted to stand on my own two feet and pay my respects – but funerals are quite exhausting in many ways.

Practically speaking the seating in churches and even crematoriums is not designed to be comfortable.  Sitting on a wooden pew or bench can be quite tiring for the CFS sufferer and you may find remaining in the wheelchair is less tiring physically. 

Arrive a little early and you’ll have plenty of time to find a space either at the front or at the end of an aisle.  If you are part of the main funeral party make sure you explain your extra needs to the funeral directors.

During the ceremony if you are able to stand and feel you want to, even if you using a wheelchair, then do it.  Don’t worry about what other people may think.  This is a deeply personal experience. 

Be warned, that certainly with church funerals there’s a lot of alternating between sitting and standing.  You will be asked to stand for some parts of the service and during hymns.  Don’t be afraid to remain seated if this is what you need.  It’s quite cacceptable and not dis-respectufl – your respect comes from within.  Also it’s now perfectly acceptable to bow your head during prayer – no need to struggle to kneel.

I struggled a little with brain fog to follow the words to hymns on the service sheet.  It can happen.  If you struggle it’s ok not to sing. 

If you asked to do a reading or say a few words at the funeral try and think practically whether you will be able to.  It’s better to be honest and explain the situation to people, most people care and won’t want you to push yourself and make yourself ill.  If you want to speak at the funeral but you’re not sure you will feel up to it on the day you could ask a friend or relative if they would consider reading something you have prepared, even to step in at the last minute if you feel unable to.

Do not underestimate the strong emotions of the day and the effect they can have on the CFS sufferer.  This in itself can be quite tiring.

I found I had a very strong reaction to the death of our family friend, even though we were not close personally.  It’s possible that news of a bereavement can trigger feelings of other grief and loss, perhaps unresolved from the past.  Also to bring us to think about our own life, mortality and the quality of life we have.  I found myself also pre-oocuppied with the huge amount of love and support I continue to receive from my loved ones, as well as grieving the loss of the life and possibilities I had before CFS and consequently a little guilty at being so internally focused at such a sad time.

All these feelings are natural.  It is best to accept these feelings rather than deny them.  You can find good advice for dealing with grief and loss on the internet and other sources – much more qualified to give advice on these matters than me!  But please know it’s ok and not unusual to feel a range of emotions at this time.

Funerals are useful ways of dealing with the feelings of loss that come with a death.  I wish I had allowed myself to cry more and feel more instead of holding back at the funeral last week.  I was worried it would exhaust me – but I now feel it would have helped me even more.

Finally, if you are not well enough to attend a funeral consider having your own private ceremony at home to co-incide with the funeral, or find a personal way to mark the passing of and celebrate the life of the person who has died.  Perhaps saying a prayer, reading a poem, lighting a candle, playing their favourite music.

I’m sorry if these tips seem a bit basic but there were a lot of things that hadn’t occured to me until I attended a funeral as a CFS sufferer and suddenly found some unexpected difficulties.

I’m not able to offer advice to CFS sufferers recently bereaved and needing to organise a funeral.  But I would be very happy to link to your advice if you have experience and practical tips in this regard.

I do know however that we don’t stop being ill because someone we love is facing death or has passed away.  At this time more than ever we need to be able to ask for help – emotional and practical – from those around us.

You can find more (non CFS specific) advice about grief, bereavement and funerals in the UK here:

http://www.bbc.co.uk/relationships/coping_with_grief/

http://www.crusebereavementcare.org.uk/index.html

Anonymity Isn’t Easy

So I started this blog as a place to let off steam about living with Chronic Fatigue Syndrome (and keep some of that stuff off my other blogs).  A place where I could be a bit more anonymous so I can talk freely without worrying everyone around me.

But I’m rubbish at being anonymous.  I was going to reply to your comments yesterday and realised that would reveal my identity.  But the whole point is not to need to think so much “should I, shouldn’t I”?

I figure those who read around blogs and visit my other blogs will spot very quickly who this is anyway.  Seeing as how the mood from my two main blogs, and the forthcoming abscence from posting are in perfect snych!

I will never make a secret agent.  There’s another career hope dashed. 😉

So this is my partly coming out post.  I am a multi blogger with not enough capacity to log in, log out and assume another identity 🙂

Lesson Learnt: My honesty is engrained all the more by CFS.  Simplicity is being who I am.

Here lie the ramblings of rachelcreative when she’s feeling all in a knot about CFS, illness, disability and life.

Crusty Clothes

Well it’s not a nice topic but it’s a point of odd fascination for me. 

Ever since I’ve been ill I’ve noticed more and more how crusty my clothes get so quickly.

Somehow I splatter myself with food however hard I try.  It’s not like I even realise that food escapes me, or that most days it’s a particulalry big effort to put food in my mouth.  But all the same, somehow, these crusty little food stains appear.  It just happens.

I cringe with embarrassment for a minute or two, but realise this happens despite my best efforts so it’s not worth getting embarrassed about.  I do wonder some days though how I got to be this slightly vacant looking, crusty clothed, unkempt, sofa sitter.  In fact some days I need someone to remind me it’s because I’m ill.

Lesson:  don’t judge a book by it’s cover – however sticky or crusty it may be.


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