ME and Dr Raj

I first met Dr Raj when I went for a rheumatology appointment back at the beginning of the year. Dr Raj was brilliant, he referred me for a bone scan, I had yet more blood tests (basically everything he could think of he wanted testing), he examined me, he referred me to a Fibromyalgia course that is run by professionals. My Mum and I thought he was great. He was so thorough and kind.

My next experience with him was very different. Dr Raj went through my bone scan results and told me everything was fine and there was no inflammation in the joints, which was good news. He then went through my blood test results and again everything was pretty much normal, as expected. Dr Raj then went on to tell me that there was nothing serious that was underlying, which I’d known all along. He told me that I should wean myself off of all my medications and if I were to get a job and keep my mind active then all my symptoms should disappear. As you can imagine I was very anger at this comment. I was actually speechless. I couldn’t believe that this guy was totally dismissing the fact that I can’t get out of bed in the morning/ afternoon/ all day sometimes. He was dismissing the fact that I am exhausted all the time and need about 11/12 hours of sleep and all of my sleep is un-refreshing. He was ignoring the fact that I have M.E.

If I was a younger person, with a parent that believed every word a Doctor said I could have been in trouble. Giving this kind of advice to a person with M.E is dangerous. This could make a person much much worse if they were to follow this advice. Luckily, I have parents that believe me and believe that I am poorly and that keeping my mind active isn’t going to make me recover miraculously. Does this silly doctor not think that if it was that easy I wouldn’t be in bed, I would be back working, doing what I love and earning a decent wage? Funny enough, at the age of 23 I would rather be out and about enjoying my life, than in bed most of the time!

M.E and Fibromlyalgia are NOT made up. They are real conditions that are serious. People can die from these illnesses and this silly man is dishing out advice that is totally wrong. How can this man be practicing if he knows nothing about conditions he is supposed to know about? How is he allowed to give people advice that is dangerous?

My god do I wish Dr Raj was right and that my symptoms would disappear when I got a job, I would be back in my gymnastics club quicker than you could say gymnastics, but sadly this man has got it very very wrong. He does not know anything about either of my conditions and is therefore totally unqualified to tell me what to do in regards to my health.

I know my body and I know what I need. And I certainly don’t need some silly doctor telling me what to do!

Take Care my friends and don’t believe everything you are told,

Rachel xxx

ME and Buses

I don’t do buses. I never have. I hate them, but sometimes there is no other option.

My hatred goes beyond the norms of the smelly person, the wont shut up person, the fact that if the temperature is above 10 degrees outside, you sweat your ass off as the sun beams through the glass. I hate buses because I don’t know where to sit.

To the world I look like a healthy, young woman, but I am not and this causes me problems.

I cant even think about climbing the stairs on a bus, so the top deck is straight out of the question, I cant even think about climbing the one or two stairs at the back of the bus, therefore I am left with limited options.. The fold up, cant even call a seat seat. The disabled seats, or the limited “normal” person seat that are always taken up. I would always opt for the “normal” person seat (you know, the seat that are just behind the disabled seats) but these are always taken when I get on! The fold up non seat is a joke and I wouldn’t be able to walk if I sat on one for more than 30 seconds, therefore, I am usually left with the disabled seats.

Now, I don’t have a problem with using these seats, I think I am entitled to sit there. However, on a recent journey, I was thinking about potential conversations that I might have with people regarding me sitting there. I couldn’t think of a way I could answer someone, politely, yet firmly about why I was sitting where I was. Nearing the end of my trip, I came up with “I’m aware these seats are for disabled people, that’s why I am sitting here.” I thought this was a good response and was then kind of eager for someone to confront me and tell me to move. Of course they didn’t, and I haven’t been asked yet. Although I do get funny looks on each bus trip I make, whether I am imagining them or not I am not sure! People cant see my illness and sometimes I don’t take my stick out with me, therefore people probably just think I’m a selfish person for taking up a seat that I “shouldn’t” be in. Little do they know that that bus trip I am making is causing me so much pain and exhaustion. They don’t know that I’ve driven to the bus stop. They don’t know that I’m in constant pain and sitting on those hard seats in the same position is making my pain increase. They don’t know how exhausting it is to do all of this and to cope with all of this.

Another hard part of the bus trip is the getting on and off. Is the driver going to drive off because I am a “healthy young woman” and I’m going to have to bus surf and battle with that as well as battling to walk. Will the driver give me enough time to walk from my seat to the exit? (Sometimes they don’t, and they just go to the next stop – which can be disastrous for me, and I’m already exhausted from the whole trip and my legs don’t want to carry me any further.) This is when having my stick with me comes in useful, because it is something visual for the driver to see to show that I can’t walk well. He will then allow me time to get off, and if he’s feeling nice, he might even lower the step from the bus to the pavement. Also, he will let me get to my seat before tearing off.

Getting a bus seems so simple and easy for so many people, but believe me, for some people out there, getting a bus is one of the hardest things they have to do in a day.

Take care and avoid those buses,

Rachel x

M.E Awareness Week - Part 2

Finally I have got round to writing part two, only about a month later than I hoped for. Thanks for bearing with me! 

(I'm not a natural writer, it takes me time to think about what I'm going to say and it takes effort for me, hence why I'm not blogging as much as I would like to in an ideal world. Also, I have a serious condition to contend with, which also likes to stop me from writing. Often, when I am well enough to blog, I am also well enough to do something, like getting out of the house and I often seize that opportunity, leaving me totally exhausted when I get home and therefore unable to blog and think and concentrate.)

My life has become about compromise. I can't do everything that I want to do, so I have to find ways to do things, within my boundaries. I also have to prioritise a lot, as my energy is very limited and it just won't stretch to what I desire to do. 

I still find it totally bizarre that I have to rest so much. I ask myself and others a lot, "Why does my body need all of this rest?" Little exertion causes great exhaustion. 

Now that I have my disabled badge, I feel like I have got quite a bit of my life back and that really helps me mentally. The badge enables me to go anywhere I wish and to park right outside. Having the disabled badge has meant I can get out a little more and therefore helped my mental health. It has also helped my physical health because it means that I am walking much shorter distances if I do go out, meaning less steps and less energy spent. My life has now become about saving energy in any way possible. I can't waste any, it's very precious. For example, if I ever go food shopping, I will plan my route around the supermarket to not go up any isles that are unnecessary as this would be energy that is wasted. Things that I wouldn't have even thought about before my illnesses, now are part of my planning and part of keeping me as well as I can be. 

For quite a while after I got poorly I was still going into gym and watching classes and trying to involve myself, even if it meant just watching people, however, I have got out of the habit of going, mainly because I was coming away from the gym feeling very sad and upset that I couldn't do the things I was seeing people do anymore. I'm not able to coach and support or demonstrate things and this was very horrible. I guess I kind of grieved gymnastics, by watching some classes and then not going at all. I still love gymnastics and can not wait to get back in the gym and learn skills again and to coach again, however, at the moment I am happier staying away from the gym. 

My days now consist of about 12 hours of sleep rather than 12 hours of gymnastics/ working out and this still makes me sad. I now also love television which I never particularly cared about in the past. To say my life has turned completely around wouldn't be an exaggeration. 

I just know that this illness is here to teach me something and I have to ride it out. I will become a better person from this experience and the lessons it teaches me will change my life for the better. I believe that everything happens for a reason and that helps me get through it. 

Sorry for the slightly jumbled post, but I hope you learn a tiny bit more about my condition from it,

Take Care,

Rachel xxx