Wednesday, 12 November 2014

ME and Dr Khot

Up until today I felt like I had a good doctor that was very honest with me and caring. That feeling changed this afternoon completely and I'm quite annoyed with him.

Jack took me to my appointment today. Two reasons were behind that. One was the fact that Jack is a very eloquent speaker and secondly, Jack sees me nearly everyday and sees how my condition effects me, both physically and mentally.

My doctor greeted me by saying rather accusingly, "Why are you in a wheelchair?" I was a bit taken aback by this. I use my electric or manual wheelchair nearly, if not every day now. He does know this fact. Straightaway I felt like I was being accused, scrutinised, disbelieved. Dr Khot wanted to know exactly what was causing me to be in the chair.. I gave him the same answer as I always do; the combination of the massive amounts of fatigue and pain I felt today, caused my legs to say "No can do!" and therefore it was definitely a chair day. 

Dr Khot then allowed Jack to speak. (He had told Jack he didn't want to hear from him at the beginning, he wanted me to explain first of all.) Jack asked why after 3 years and 3 months why I haven't got an official diagnosis of ME, when I so clearly have ME and consultants have told me this also. I know I have ME and don't particularly want an official diagnosis in order to get treatment.. Lets be honest, there isn't any treatment. But I would like one in order to make my DLA/ PIP/ ESA/ Atos stuff sooooo much easier. I am currently waiting for a decision back from the latest DLA form regarding my change of circumstances, ie, I've got worse, and I'm so worried that my doctor isn't going to support me in the form, because he just doesn't understand ME and doesn't listen to me when I tell him how bad I am and how much worse I feel I am getting. If my doctor doesn't support me then I will have to appeal and cross that bridge when/ if I come to it. 

I asked my doctor about the report that DLA have requested from him, and he honestly, walked out the room and kind of waved his arms in the air. DLA is a lifeline to me. He clearly does not understand that/ doesn't care. 

During the consultation, Jack told the doctor about my very low moods, which my doctor totally ignored. I couldn't believe he didn't even stop to ask me about this. Low mood or depression may be a normal part of chronic illness, however it still needs to be addressed and talked about. 

Overall, I am extremely dissatisfied and will be seeking a new doctor that actually shows some compassion and that actually wants to help me, not just palm me off. 

Rant over! 

Hope you are all having a happy Wednesday,

Take Care,

Rach xxx

ME and My Birthday

It was my birthday back in September and I had such a brilliant day. It was my 24th birthday. I love birthdays, not necessarily my birthday, just anyone's so I can make a fuss of someone and find the perfect card and present. Since being poorly, finding the perfect card and present has become more difficult because I don't have the energy to shop really. 

Anyway, my birthday was perfect. I went for afternoon tea at Metro Deco in Kemptown with my family and my boyfriend Jack, which was absolutely delicious. I love afternoon tea! Afterwards, we went onto the pier and played on the 2p machines in the arcade. I don't know why I love doing this so much, maybe it reminds me of my childhood but its a favourite thing to do, so naturally on my birthday I had to do it! We then walked along the beach, (I wheeled) and then came home. Ellie popped round to see me and soon after Jack and I went for dinner at Jamie Oliver's restaurant and had such a lovely, lovely meal. I got all dressed up in a French Connection maxi dress and wore my Christian Louboutins. I was going in my chair so knew I would be able to wear the shoes because I wouldn't actually have to walk in them!!! I felt amazing in this outfit! Jack and I finished off the night with a few cocktails in a bar. 

It was amazing! I had such a brilliant day!!

Enjoy your day guys,

Take Care,

Rachie xxx

Sunday, 2 November 2014

ME and My Trip To London

A few weeks ago I went to visit a friend in London. I had visited her before but never had I gone up in my electric wheelchair, alone. 

When arranging my trip, it sounded amazing. I couldn't wait to go and see Isobel and spend the night in her flat with her and have a catch up and a takeaway! 

Jack drove me to the station and came in to make sure I got on the train okay. Well, I missed the train. Wheelchair + train + ramp = Must be at the station at least 15 minutes before departure. I am the worst timekeeper ever and arrived at the platform as the train pulled away. I got on the next train, (I had paid to get on a certain train so they were lovely to let me get on the next one for free!) then the crying began. I cried non-stop from Brighton to London. Reality hit. I was alone. I had to get myself across London all by myself in my chair. Luckily I was in the disabled area on the train so no-one was about to hear my blubbering. I was going to get off at the first station I came to and turn around and come home. I was panicking BIG TIME. I wanted to get home to my comfort zone and safety. 

However, I didn't get off the train. I stayed on it and got to London Victoria. Mum had persuaded me to go and ask for help from the bus kiosk, and they couldn't have been nicer. A guy took me to the bus, put me on it, and asked the driver to tell me when I had to get off. My nightmare was over.. I was on the bus fine with no difficulty whatsoever. All that worrying for nothing!! 

I am so pleased I perserved and stayed on the train because I had a brilliant time with Isobel. We had a proper catch up and had a laugh and had fun. 

I have now overcome my fear of London Buses and will be confident to go up to London on my own in my chair. 

I could only think of the worse possible things that could happen on that train and on my journey across London, and none of those things came true. My mind told me various things, trying to get me to go home but I showed ME who was boss and went and had fun! 

Don't believe the stories that your mind tells you,

Take Care,

Rachel xxx