Tag Archives: medical

What Drives You?

78 days ago I started my very first ever blog, stating that 132 days earlier I had come down with a horrid cold that lead to M.E. It is now 210 days since all of this began. This will be my first month where I will not receive a full salary and I am very aware of the long road ahead. Radio 4’s Libby Purves this morning asked her guests, “what drives them?” This made me reflect on my own situation and ask the question, “what drives me? In the face of so many difficulties and so many opportunities to give up a sense of positivity and a determination to get better, what drives me to not give up?”

If I am honest, I don’t really know. I’ve never liked to be the sort of person that doesn’t do well in whatever I do. I’m also highly competitive and the idea of failing to achieve something I’ve set out to do seems very unacceptable. I am driven by a determination to get better. I don’t know when I will get better or whether in reality I will ever be truly ‘better’ but I have an internal determination to not give up.

20140514-095344.jpg

When I first became ill (post the cold) my doctor and I thought it would only be short-term. Then it was easy to be positive – I was not going to be sick for long and when I got better, life would thoroughly return to normal. It became clear after the first month or so that this would not be the case. I was not making progress, if anything, I was going backwards.

The challenge in those early months was the determination to learn as much as I could about this illness, educate myself to the point where I could begin to direct my own treatment, begin to take control of what was happening to me and what I needed to do to make progress.

Don’t get me wrong, there were long days and weeks where making progress or feeling hope was incredibly difficult. It seemed at times that my health was only going in one direction – down hill. I felt that it was inevitable that I would join the ranks of those where were severely ill with M.E. – housebound and more likely than not bed-bound.

Despite this sense, I still somehow managed to retain the drive to stay hopeful and try and do something about my situation. It was, however, only when I thoroughly accepted that I was seriously chronically ill that my health began to improve. For me it was the acceptance that I was very ill that made each aspect of my treatment (pacing, meditation, medication, exercise) take on a new very important role. To fail to stick rigidly (as much as one can when you have M.E.) to my treatment plan was to quite simply postpone the point when my health returned to something resembling normality. If missing a tablet would be consider medically foolish, then surely continuing to walk when I began to tire was no different.

Over the last few months, I have had a dawning realisation that this illness has given me an opportunity. I can’t exactly describe what this opportunity is, it has yet to become clear. I can’t help however feeling that my life will change utterly when I am ‘better’. I have always firmly believed in the old saying – every cloud has a silver lining. I am excited now to discover what this opportunity may be and this is helping to drive me not to give up, to stay strong and determined.

Now I also have the additional knowledge that I can reduce the impact of my illness on my life. I have had several weeks of feeling ‘well’ (at least in relative terms). So now when I have a bad day or a bad week, I know it is in me to feel better again. I have the means to do it. It helps retain a sense of hopefulness and further reinforces my sense of determination that I will get ‘better’ and I won’t give up.

I am certain that 365 days of being ill will come and I will not be ‘better’. I know that the road in front of me is incredibly long. I know I will have dark days. I will have days where I know I have done too much and will kick myself for not having stopped earlier. More importantly, I know that I will retain my drive to keep progressing and I will not give up.

See also my other non-M.E. blog – Me Opinionated! Really?

20140514-095421.jpg

Advertisements

I have a cure…well maybe not…don’t do that it will make you worse!

Imagine that you are a loving, caring parent of a well-behaved, hard-working child. You are worried though because school seems to be a real struggle for them, especially where reading and writing are concerned. You notice that they tend to mix up letters when they are tired and struggle to follow lines in a text. How would you feel? Angry, frustrated, worried, alone?

You probably have a feeling that the problem might be dyslexia but you’re no expert so you can’t be sure. You do what any sensible parent would do and make an appointment to see their class teacher.

Imagine then that the teacher, worst case scenario, tells you there is nothing wrong with your child, it’s all in their mind! How would you feel? Angry, frustrated, worried, alone ? Would you think maybe it is all in your mind or maybe it is your child’s fault? Why not, somebody more expert than you has made that suggestion!

What about best case scenario they say that they think your child is dyslexic and that the child will just have to deal with it but don’t give you anything practical to do? How would you feel? Frustrated, alone, confused, worried, angry?

So what would any good parent do when they hear that their child has got dyslexia? They would google it! Now imagine on googling it you read a description of what dyslexia is and it perfectly matches your child. You then read up on how to ‘deal with it’ as the teacher suggested; every website has a different suggestion and often these suggestions are met with derision or anger on another website. You spend hours researching and ultimately end up with no clue as to what you should do although you are determined to do something! How do you feel? Scared, angry, frustrated, confused, alone?

So you return to the teacher and say I can’t do this alone, I respect you are more of an expert than me but I need someone with more expertise than you. They are lovely about it and say they will see if they can find someone. Two weeks later you follow it up and they say they have spoken to everyone in the school and nobody knows an expert. How do you feel? Scared, angry, frustrated, confused, alone?

So, imagine you return to lovely google, it takes seconds to find that there is a state specialist in the next county, although there is nobody in your county. You think, I’ll be efficient and give them a ring so I know they are the right people to pass on to the teacher. They say they are but as you are in a different county they don’t have to take you on. How would you feel? Angry, frustrated, worried, alone?

You get the teacher to make the referral anyhow and wait in trepidation to find out if you will get an appointment. In the meantime you meet lots of people whose children have dyslexia and read treatment surveys that show the official state recognised treatments are recognised to make the problem worse and are not recommended by the real experts. They are treatments based on an old understanding of the problem that has since been disproved!

You further learn that there are treatments that help far more people (though no guarantee of a cure) but they are not available from the state. So now you know your much fought for specialist appointment, when eventually it comes, may actually make your child worse! How would you feel? Angry, frustrated, worried, alone?

You quickly realise the only way to help them is to try as many different treatments as possible, some costing a few pounds some thousands but none of them covered by the state. You are very aware though that these may help your child but reading treatment surveys, you are also aware that they could make them worse. How would you feel? Angry, frustrated, worried, alone?

If parents of dyslexic children were really treated this way, do you think it would be accepted? Do you think it would be fair? Do you think you could cope?

Replace the word teacher with GP and dyslexia for M.E. and that is the reality for all sufferers. Some of us, like myself, are lucky to have supportive GPs (even if they don’t know a lot) but far too many patients are accused of being depressed or anxious and that it is all in their mind. It is not unknown for people to be forcibly sent to psychiatric hospitals or children to be removed from their families because the symptoms are seen as a cry for help from an abused child, there are bed-bound patients who haven’t left the house in 5 years who haven’t seen a GP or a consultant in this time because they can’t leave their house and doctors won’t visit them.

How would you feel if that was you, your partner or your child? Angry, frustrated, worried, alone?

So what is needed? More invested in research both of the cause and a cure. An investment of £1 per patient per year in the UK is not enough to help 250,000 people whose lives are permanently on hold. People who could be income generators for this country, people who could add to the intellectual wealth of this country are being prevented from doing so because M.E. is not only a misunderstood disease but one that is unattractive for investment and for researchers.

I cannot solve this alone, my family cannot solve this for me – for the moment however I have no choice but to try.

20140307-094245.jpg