Thursday, 31 January 2013

When You Have A Chronic Illness Do You Ignore a New Symptom or Consult Your Doctor?

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When you have a chronic illness one of the major decisions you have to make is whether you ignore a new symptom or consult your doctor.  This may not sound so huge, but actually it is.  It is physically and psychologically exhausting to always be aware of every ache and pain in ones body.  Yes, we're ill, but we have to also try to live as normal and full lives as possible and that is not going to be possible if we're always looking at the physical state of our bodies.

Wednesday, 30 January 2013

NHS Choices Rejects Honest Patient Review of GPs

NHS Choices claims to be the "online 'front door' to the NHS" and to give you "information you need to make choices about your health" but nothing could be further from the truth especially in the case of apparent patient reviews of GPs.

The NHS website allows you to find a GP in your area and has information about what services the surgery offers and you can read reviews left by patients.  

You are asked to rate the GP practice in the following different areas with 1-5 stars:
  • How likely are you to recommend this GP surgery to friends and family if they needed similar care or treatment?
  • Are you able to get an appointment when you want one?
  • Do the staff treat you with dignity and respect?
  • Does the surgery involve you in decisions about your care and treatment?
  • This GP practice provides accurate and up to date information on services and opening hours

Monday, 28 January 2013

A New Day, A New Doctor

I've been with my current doctor's surgery my whole life and since the normal spate of childhood illnesses and up until I became ill with ME/CFS in my mid-twenties, I really had little or no need for any medical attention.  However, even in the last ten years I have noticed a severe decline in the service provided by my surgery.

When I first started to get involved in ME/CFS groups, I heard so many horror stories about the way ME/CFS'ers were treated by their GPs.  I heard how one girl was told by her GP that she was hungover for three years, despite repeatedly telling her GP that she could not drink alcohol as it made her even more ill.  Others were accused of having a cold/flu, of imagining it, or even told off for wasting the doctor's time.  I was just so grateful that my doctor listened to me and sent me for test after test to investigate my symptoms, that I never doubted the medical care that I received.  My GP was always open to letting me try different medication.

Sunday, 27 January 2013

The Importance of Routine

It's very early on a Sunday morning and I lie in bed tapping out this post on my BB, thinking about wasted time and hoping I don't wake Daniele who is still asleep. I spend all week looking forward to the weekend when I get to spend quality time with him. We used to go out exploring but recently because of my health we can sometimes manage a short walk but not much more. Daniele suggested a short walk up to Knightsbridge yesterday as he needed to get some coffee pods for his Nespresso machine but I was not up to it. In fact I spent the whole day in bed, sleeping on and off. Saturday's are so precious that I can't help feeling the crushing disappointment of having wasted a whole one.

Thursday, 24 January 2013

Refuse To Be Ill?

Today I'm so ill and beyond exhausted - I don't just need someone to make me something to eat, but they also need to chew and swallow it for me too.  I posted something similar to that as my status message on Facebook (first mistake, I know) and my friend who will be visiting London next week responded with "Try to shape up for next Wednesday sweetie!!"  I know he means well and I get the sentiment, but it's just too much today and this comment and his subsequent comments have really upset me.

There's a quote by Edward G. Bulwer-Lytton:

Wednesday, 23 January 2013

ME/CFS and Deeper Shades of Birthday Blues

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For as long as I can remember I've never really cared for my birthday, and that sentiment has only become worse since I became ill.  That dreaded annual event rolled around again two days ago and I felt so down for weeks prior to it.  I’m 37 years old and I’m ill again and I just felt so tired, old and useless.  I rarely feel that way, but something about my birthday brings out the most dispirited side of me.

I was 25 when ME/CFS hit; I had love, laughter, friendship, a career in a brilliant company and plans, lots and lots of plans.  All of that went away for 10 years, so I was in my mid-thirties by the time I next resurfaced.  I managed to catch up a little but then I drowned again and now it seems the closer I get to 40, the more I feel the loss of that time.

Tuesday, 22 January 2013

A Positive ME/CFS Sufferer or a Negative One

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I’ve been asking myself a lot recently if I’m a positive ME/CFS sufferer or a negative one.  What do I mean by this?  The whole purpose of writing this blog and my other articles is that I’ve wanted to be able to provide a relatable account for other sufferers.  When I first became ill, talking to and reading about other sufferers is what helped me the most.  I’ve always felt it was my duty to put my story out there.  Before I come across as too much of a martyr, it has also helped me immensely to write about my experiences.  Actually, at first it was really painful to write about ME/CFS, but now it is easier and helps, especially when things aren’t so good.  Recently they haven’t been so good and that is what brings me back to wondering if I’m a positive ME/CFS sufferer or negative one.

Tuesday, 8 January 2013

Repeating Mistakes: Not Giving ME/CFS Its Dues

Just before Christmas I wrote A New Lesson in Loneliness For a ME/CFS Sufferer where I talked about not giving the illness its dues and how I would try to be more aware.  Not even a fortnight after that, I was making the same mistakes again.  A friend contacted me recently and told me that he will be visiting London with his girlfriend at the end of the month for a long weekend.  I was so excited and we were happily making plans for all the things we would do while they were here.  I vowed to keep my schedule free and make myself available while they were over.

The next day I went out for a walk and I have had a sore hip since then and yesterday nerve pain flared up in my thigh.  It was a painful reminder that once again I had totally forgotten that I have ME/CFS.  I don't understand how I keep doing this these days.  I lived years only being aware of my illness and symptoms; they ruled everything I did.  Now, it is almost like I forget I am ill; it stares me in the face all day every day and still I don't notice it.

Thursday, 3 January 2013

Can You Quit Smoking With Electronic Cigarettes? A Real Review From A Real Smoker

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I’m writing this after trying to find some real information about electronic cigarettes online.  What I mostly found were articles with regurgitated product information that did not tell me anything new, or I found myself having to trawl through forums for even the most basic info.  All I wanted was a real account from a smoker who had tried Electronic cigarettes; so here I’m going to recount my experiences.  I am not affiliated with any ecig company and am not making any money for my comments, good or bad.

I’ve been smoking for more years than I’d like to admit, but I quit for about 3yrs when I was very ill with ME; I was literally too ill to smoke.  Stupidly, I started up again, smoking around 5-10 a day, and then managed to quit again.  However, in 2009 I started smoking again after 1 year of quitting and I was smoking up to 15 cigarettes a day; when that became too expensive for me, I switched to rolling tobacco.  I tried giving up several times but I just couldn’t.  In January 2010 I saw the ‘Quit Smoking’ service in Boots and signed up for that.  They gave me patches and inhalators, and I quit for 4 months before starting up again.

Wednesday, 2 January 2013

Starting the New Year Crawling Out From Under a Relapse

It's day two of the New Year and I am only just crawling out from under my latest relapse.  I thought I was on an even keel health wise, having recovered from the flu that swept through me back in October, but how wrong I was.  I invited my sister over for dinner on 27th December, but it was all too much for me; far, far too much.  So I've been sleeping almost non-stop since then and in a lot of pain with joints and back.

But I'm feeling less dead today, so have been thinking about what I want from 2013.  While I don't make resolutions specifically for the New Year, I am always setting myself new goals and I am a constant dreamer.  My main goal for the coming weeks is to get some kind of routine down; I seem to be in a boom and bust cycle at the moment.  I need to establish a base level of what I can do and then try to gradually incorporate more activity from there.  This was my goal for 2012, but I more or less spent the year on the roller coaster of ME/CFS with little or no control.