Back To School

As you may remember, at the begining of the year I enrolled in a cake decorating class. It did not go well to say the least. I didn't want to even go to the first session and Mother pushed me out the door and it wasn't quite as bad as I imagined but I knew I wanted to get out of the class ASAP and never return! My cake decorating abilities haven't developed since.

However, I decided to enrol in a couple more courses more recently, starting in September '14. I enrolled in Sociology GCSE, Face Massage and also, a one day course on Mindfulness Meditation. I'm pleased to say that Sociology is still going well, although I've been too poorly for the last two sessions and I'm off to Ireland tomorrow so that shall be another class I will miss! I really like everything about the course, it gives me something to do on a Thursday night, Jack and I do it together, there are nice students and I'm learning again. It's fun. I think it's built my confidence up and I was looking forward to starting my face massage course, however I got an email to tell me that they had to cancel it due to low numbers, which was really sad as I was very excited for it. Also, my one day course on Mindfulness Meditation wasn't accessible, therefore I couldn't attend as my electric wheelchair doesn't like climbing three flights of stairs!! 

I am really liking learning again and having a routine! It's been a couple of years since I've studied anything so it's great to use my brain a bit, although brain fog gets in the way quite a lot!

I can only do what I can do, but I'm going to bloody well try my hardest! 

Take care my friends, 

Rachel xxx

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

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

Rachel's Fabulous ME Awareness Picnic

I haven't posted in ages but I have a few new posts up my sleeve to follow this one. 

Back in August I hosted a picnic in aid of The ME Association. I didn't manage to organise anything for ME awareness day/ week due to the nature of the condition, however, I finally got round to organising an event and I was really pleased with how it went. 

The picnic didn't go quite as planned though.. The gazebo and 'A board' didn't get used as my brother kindly offered his flat to host the picnic, therefore there wasn't room for either of these things. The weather was not good that day, very cold, windy and rainy, so an indoor picnic was much warmer and drier!! 

Lots of people showed up. Many family and friends came to support both me and The M.E Association, which was absolutely brilliant. Altogether I raised £168.83. I was so so happy with this amount. Every bit of fundraising helps. 

Thank you to everyone that donated prizes, (Nails By Zoe, The Thistle, Leanne, Kerri-Marie, Ajay, Mumma. I apologise if you donated a prize and I have forgotten to mention you!) and to everyone that donated on the day AND online. Thank you so much from the bottom of my heart. 

Take care,

Rachel xxx

ME and London

Last week I decided that I would go up to see my friend that lives in London and stay with her. We arranged when would be best and I booked my train tickets and was looking forward to my night away. 

Input - the pain management course I went on in London, gave me the taste of London, and I loved "living" there... I was back every weekend but nobody needs to know that! Anyway, I missed London and, of course my friend, hence my reason for the trip. I also thought that the travelling would challenge me mentally, as I'm still getting used to using my electric wheelchair on public transport. I was very anxious the first time using the train in my chair as I didn't know what the ramp was going to be like, would I fall out of my chair and onto the tracks? However, I have got more confident about travelling on the train now, since doing it a few times. 

On Monday, I was booked on the 15:19 train, and as usual, I was late. I watched the train pull out of the station, just as I reached the platform. I thought this would mean that I would have to buy another ticket but the guard was lovely and let me jump on the next one. After managing onto the train perfectly fine, no falling on to the tracks!!.. The realisation of travelling across London, on my own, in my chair, hit me. I cried from Brighton Station to London Victoria nonstop, sobbing quite frequently. Luckily, I was in the disabled area and no one else was around! 

My boyfriend got a 40 minute phone call of me crying saying that I wanted to come home. My Mum got a 20 minute phone call of me crying saying that I wanted to come home. I just could not cope with the idea of getting on a London bus, or any bus for that matter, in my chair. I searched online how much a ticket back from Victoria would be.. I wanted to just get back home to my comfort zone. I didn't turn around and come home though, I asked for assistance and a lovely man helped me onto the bus, (moving me and the chair, weighing about 200kg between us) and told me when to get off and everything I needed to know. My anxiety went right down once I was on the bus and was really pleased with myself for carrying on and not letting my anxiety and ME get the better of me! 

I had a really lovely evening with Isobel, we had a delicious Japanese meal and a good old chat. It was fab seeing her. I am so pleased that I didn't bottle out and pushed through it. It was really tough but was worth it. 

Rachel 1 - ME 0.

Test your boundaries if you can, you might have a lovely reward if you do! 

Take Care,

Rachel xxx

ME and the MS Abseil

Today, Freddie and Jack walked off, and down, a cliff for me and to raise money for the MS Treatment Centre that I go to. I have Hyperbaric Oxygen Therapy there. The centre are amazing and help so many people with neurological conditions, using various therapies. 

I've been having HBO since October last year, and I try to have at least one session a week. It is heavily subsidised which is why I thought it was so important to get the boys to do this fundraiser. I would have absolutely loved to have done the abseil but I don't have the strength in my arms or legs. It was brilliant to watch to abseil but a bit heartbreaking too, the fact that I couldn't participate, and also, for the fact that Freddie and Jack were doing this for me, because I'm ill. 

The car park was about 150 metres from the cliff top. After the abseil, the walk back to the car was agonising. It took me about 20/25 minutes. These are the times that it really hits me hard. I think it's due to my fitness background, that I can't bare it when my walking is this bad. I get embarrassed. I feel like everyone is pitying me. I get frustrated that my legs won't move how I want them to and at the speed I want them too. THIS is the reason Freddie and Jack took part today. Although it was absolutely awful, it illustrated quite well why they did it. 

Together, the boys raised £265. This money is so vital to the survival of the centre and to the survival of people that use the centre. That might sound dramatic but the therapies that the centre offers, can help prolong lives. Thank you to every single person who donated. It means the world to me and to the centre.  

THANK YOU!! 

Take care,

Rachel xxx

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

ME Awareness Week - Part 1

Did you know it was ME Awareness Week? I bet you didn't! Would you be able to tell me what colour the ME ribbon is? Before I had ME I didn't even really know what ME was, let alone what colour the ribbon is or what day/ week ME Awareness Day/ Week is. This is the reason why this week is so important.

ME is a very serious condition that changes lives. ME couldn't really have changed my life more if it tried. I used to be out from about midday to midnight, five days a week, at my gymnastics club or in the gym working out. Sometimes, I would let myself off on a Saturday and rest and then back to a hard three hour session in the gym on Sunday night. I was addicted, and I LOVED it. I was so incredibly happy with my lifestyle. 

In September 2011 I went on holiday with Chelsea and we had a chilled week, soaking up the sun and drinking a couple of cocktails in the evening. Half way through the week I noticed I was getting a cold and a cough. It didn't bother me at the time, I just enjoyed my holiday and thought it would go in a week or so, like most colds do. 

When I returned home, the cold didn't go and neither did the cough. I was getting more and more tired but told myself I was just being lazy. My three hour gym sessions were soon becoming 20 minute sessions. I was only managing three vaults in a session, rather than the two hours of hard work that I usually did. I was falling asleep in any place I could; a dining room chair, a bus, in the middle of a crowded room. I beat myself up for being "lazy". 

I had a gymnastics coaching exam in mid-October. I had worked so hard. I had completed a logbook, two theory exams and then a practical exam. The months of work paid off and I passed. I was so happy to be moving up a level in the coaching world. My plan was to go home from the exam and book straight onto the next course for the next level. Something told me to hold off and not book it right away. This was very lucky as the day after my exam I went to the doctors and got signed off of work. I haven't returned to work since. 

At first my doctor gave me antibiotics to get rid of my cough. He ignored the fact that I was now sleeping at every available opportunity and not doing my usual fitness regime. The next day, I demanded a blood test but all results were normal. Four days after, the antibiotics hadn't kicked in so my doctor prescribed me different antibiotics. That night I ended up in A&E because I was having such severe spasms in my legs I couldn't stop crying. The doctors in A&E didn't know what to do with me as my bloods were normal, my blood pressure was normal, chest x-rays were normal. One doctor just passed me to the next, then to the next, until one doctor said I may have ME. Although I didn't know much about ME, I knew I didn't want it. I knew it didn't fit into my lifestyle. 

After every single blood test you can think off, multiple MRIs, Neurology, Rheumatology and Infectious Diseases appointments and anything else you can think of (and that I may have forgotten about) I got told it is ME, fibromyalgia and slight hyper-mobility that I am suffering with. 

Two and a half years later, I still haven't accepted that I am ill, but I would like to think I am on the way to acceptance. ME has changed my life completely. It's a lot to get used to. Walking with a stick, sometimes using a wheelchair and not being able to do what I used to at the age of 23 is hard. 

I am going to divide this up into two blogs as I am too tired to continue! My next blog will be about my life now and how I try and cope with the illnesses. 

Take Care and check back soon for part 2!

Rachel x 

Motivation, Determination, Willpower

As you already know, fitness used to be my life, therefore those three words; motivation, determination and willpower, all related to the gym, gymnastics or healthy and nutritious food. Now, because of M.E, those three words all relate to something entirely different. 

In my previous life, before I became ill, I feel like I was very motivated and determined. However, this was purely to do with fitness and gymnastics. (My life didn’t consist of much else if I’m honest.) You probably know that I was so motivated that I went to the gym at least once a day. I was so determined to lose weight and get as fit as possible, I wouldn’t leave the gym until I had burnt a certain number of calories. I had a lot of willpower and would only eat food that was good for me or to help me lose weight.

Up until recently, if I met people that didn’t know me in my “previous life” I used to feel like they couldn’t see my motivation, determination and willpower. However, I have come to realize that is rubbish and I’ve never been so motivated and determined in my life. It’s just that those words are now to do with me staying alive, rather than being obsessed with fitness!

I now have to motivate myself to keep going and to keep fighting this stupid illness. I have to keep myself from going insane or getting depressed. I am incredibly determined to get better and return to gymnastics. Everyday is a battle. So far I am winning that battle, because I am still here. All day, everyday is hard work. Working as a gymnastics coach and being a fitness freak was nothing compared to what I have to do now. I work harder having a shower these days than I did all day coaching and working out in my “previous life”! Different people have different battles to fight. I am so grateful to now realize that everything wasn’t about fitness. I just wish I didn’t have to learn it this way!

However cliché this sounds, what doesn’t kill you makes you stronger,

Take care and look after yourself,

Rachel x

Isolation

Have you ever felt left out? It's a truly horrible feeling isn't it. The sad thing with M.E is that that feeling of being left out is pretty constant. I am no longer a normal 23 year old, doing normal 23 year old stuff. I am ill, I am not "normal," therefore I can't participate in all the things my friends do. This is by no means their fault that I feel left out, it is M.E's fault. 

I try to stay as included as possible with all of my friends and everyone is good at adapting to me but certain activities such as getting drunk as a skunk and dancing the night away are no longer viable. This really, really upsets me. I don't care much for the alcohol, I just want the dancing and the memory making. 

Last night, after enjoying a gorgeous dinner out, I had to go home to bed and be looked after because I couldn't move. I mean this literally. I felt like I was paralysed. My body would not allow me to move my arm to pick up my phone even. I was not tired, I was absolutely, truly exhausted. It was gutting to read, out of the corner of my eye because the phone had been strategically placed, that the girls were getting ready to go out and were discussing it on our group message, whilst I was being fed by someone because I couldn't do it myself. However, if the girls had a group message on Whatsapp without me I would feel even more left out and isolated.

I cried a couple of times last night, one time was out of pure frustration of not being able to party with my friends and the second was out of pain and because I was scared because I couldn't move. I was worried that I would not be able to move ever again, however dramatic that sounds! Having an illness can be a very very scary and isolating place, but it is always so nice to know that someone understands what you are going through and to be with you during the darkest, hardest times. 

This post just shows how little I have accepted the fact I am ill. It has no reflection on my friends whatsoever!! I want my girls to have fun, I want to know how their night was and who vomited first! Just sometimes it's hard for me to accept that I'm not well enough to take part in crazy nights like that anymore. 

I wonder how long it will take for me to accept my illness? I hope it's soon!!

Take care,

Rachel x

Life Isn't Fair

I hate M.E. 

Whilst I'm laying in bed, eyes stinging from exhaustion and needing sleep, legs and back in nearly unbearable pain, trying not to have to take a morphine tablet, my girls are getting ready for the night ahead to celebrate Lauren's birthday. Birthdays remind me more than any other time of year that I'm not well. I wanna be enjoying myself with my best friends, celebrating and getting dressed up and having a drink. Today, I can't even go to Lauren's for an hour before the girls hit the town. 

I am feeling so left out and annoyed at M.E for not letting me socialise with my friends and have fun. Lately, I am trying hard to surrender, and not do things that are going to make me feel even worse than normal, but with that comes loneliness, frustration and sadness. 

I'm feeling very hard done by and want to say "it's not fair!" I know life isn't fair (although I definitely don't want someone else to tell me that!!)

I hope my girls have a brilliant night! I'm going to try to sleep now so I can escape the pain, 

Take care, 

Rachel x 

Famous, Rich and Hungry for Sports Relief

I have just watched the first episode of Famous, Rich and Hungry for Sports Relief and my overwhelming emotion is guilt and sadness. It is truly upsetting to know that people in England cannot afford to feed themselves and their families. I wake up everyday knowing that I am going to be able to eat well for that day, in fact, this doesn’t even cross my mind, it is standard in my house, we have food in the cupboards and fridge and the only thing stopping me eating it is the fact I can’t prepare food myself due to the pain I am in. Most days I wake up and wonder what treats I’m going to have. I think about all the chocolate that I could buy, can I be bothered to go to the shop and get Giant Buttons or shall I just stick with the Cadbury’s Pots of Joy in the fridge? The people on the programme can’t afford staple meals, let alone treats. These people choose between feeding their kids or themselves. They might have only one meal a day. I am so incredibly lucky to have never had to worry about being fed.

When I got poorly back in 2011, I went from being on a very healthy wage, to £50 a week. This jump was very noticeable. I went from being able to afford nights out, lunches, dinners, dresses, and trips to Canada, pretty much whatever I wanted. I then found myself living on £50 a week and found it very difficult and ended up borrowing a lot of money from my parents. I was still trying to live a lifestyle of lunches and dinners out, with new dresses to wear all the time. I thought I had it hard living on that amount per week. I had NO idea. I didn’t have it hard. I didn’t have a house to heat, I didn’t have to pay rent or a mortgage, and I didn’t have to pay for food shopping. One of the guys on the show spent £48 on this electricity for a week, meaning he had £2.50 for everything else that week. He has it hard. What would you do if you had £2.50 for the week? What food would you buy? How would you get by?

Last week I felt unhappy so I went to Brighton to do some shopping and I ended up buying a watch for £155. I just wish I had seen this program before I went shopping because I could have donated that money to Sports Relief. I have nice watches already, I didn’t need a new one, however people do need to eat and that money could have helped feed some people. My watch isn’t refundable, otherwise I would be in the shop right now returning it so I could give that money to a cause that so desperately needs donations.

I moan about my illness and the fact that I can’t participate in things that I love to do anymore, but I must remember how lucky I am to have a roof over my head with heating that I can put on whenever I want, I have hot water and I have food. I am not hungry like others are. 

The four families shown on the program are not alone. This is a big problem in England. I don’t know about you, but when I think of poverty and starvation I think of Africa, I think of third world countries. How naïve I am. This problem is happening right here, in our country, right in front of us. This isn’t happening thousands of miles away, it’s happening on our doorstep.

To donate £5, with the whole £5 going to Sports Relief, text FOOD to 70005.

www.bbc.co.uk/sportsrelief

A couple more websites about food banks:

http://www.trusselltrust.org/foodbank-projects

http://www.faresharebrightonandhove.org.uk/

On this website, if you donate £5 it will provide 30 meals!!

Take care,

Rachel x

With ME Comes Frustration

Up until about half an hour ago, today was a good day. This afternoon I have been in the oxygen tank for about 75 minutes. I think it is starting to help increase my energy levels for a couple hours after my session, which is brilliant!! I have met a lady that also uses the oxygen tank that has ME and today we had a good chat and bounced positivity off of each other. I came away from my session feeling really positive and determined and also with a slight increased energy level than usual. At that moment I felt like I was battling ME head on with a strong mind. 

Now, just a few hours later, I am full of frustration (and pain). I was invited by a friend to take part in a pub quiz with some friends and wanted to go along and join in. I was picked up and taken there and was enjoying myself but was suddenly overcome with tiredness and pain. I had to ask my Mum to come and collect me as I wasn't well enough to stay and therefore could not take part in the quiz. I am so frustrated that I cannot do the things that I want to do. I could not sit down in a chair and answer a couple of questions. I needed my bed and to be in a comfortable position and I will be asleep very shortly, I am sure. 

I have had a busy day compared to usual but I still find it very hard to accept that I cannot do all of the things that I want to do. I have to pick and choose the activities that I take part in, however I find this very unfair and frustrating. I want to be "normal" and be able to do what I want, whenever I want. I often think that I have accepted my illness, and I think I have to a certain degree but clearly I have not fully accepted it otherwise I would not be writing this post! 

In the mean time I am going to try to work more on my acceptance, 

Take care and try to accept something in your life that you cannot change, 

Rachel x 

My Dear Grandad

I've always loved my Grandad obviously but up until recently we never really had a good bond. I saw him at family birthdays and get togethers (which works out about 1.5 a month!) and we have always got along but I'd never had a special relationship with him. 

When I was younger I used to see my Nanny and Grandad pretty much everyday. My Nanny was my world. I absolutely adored her. As far as I was concerned she was the best thing since sliced bread and although she's sadly passed away now, I still think the same. Therefore, when spending time with my Grandparents, I was stuck to my Nan's side and didn't really spend any time with my Grandad, only to repeat phrases such as "sod it" and "crumbs", two classic Grandad sayings. My Nan couldn't help but laugh whilst telling off Grandad for saying "sod" in front of me. 

You probably know that I truly believe that "everything happens for a reason." I have not worked out the reason for me having ME/CFS yet, but maybe it is to allow me to spend increased time with my Grandad and develop our relationship. As I am not working I am now able to spend a few hours with my Grandad a week, and this has very much become something I look forward to. I often go round to his house after I have had a HBO session and have a little bit more energy than usual. I love him but he can be hard work! Usually we just chat and have a cup of tea but sometimes he can be very grumpy (but can't we all when we are tired and hurting?!) and demanding.

If I was still healthy and working I know that we wouldn't have this great bond we now have, due to the amount of hours I was spending in the gymnasium and fitness gym. Therefore, I am actually thankful to ME/CFS for giving me this opportunity to spend precious time with him. 

I didn't think I would ever be thankful to ME/CFS but in this situation I certainly am.

I can now say I adore my Grandad as well as my Nanny. 

Take care,

Rachel x

Live In The Moment

Last night my Nan had a party to celebrate her 77th birthday so I was out for a few hours with my family, having a drink and eating lots of food and cake! It was lovely to have a get together and see the family I don't regularly see!

A large part of my life at the moment, is television. I record a lot of programmes, and this gives me something to do when I just can't handle watching This Morning or Loose Women anymore! Therefore, last night I had a few things set to record and I caught up with them this afternoon! One of these programmes was The Jonathan Ross Show. If you watched the  show last night you will know that Abbey Clancy, James Cordon, Uma Thurman and Andrew Marr were on the show. I often fast forward when a person comes on that I'm not interested in and was ready to fast forward when Andrew Marr came on. I then saw his walking stick and was suddenly interested in what he was going to say. That sounds a bit sick, but last I knew he was a healthy man so was intrigued to know why he now walked with a stick! 

If, like me, you don't know what happen to him, he had a stroke. He believes it was the result of pushing himself so hard on the rowing machine to achieve a target he had set himself. He felt good for achieving the goal but knew something wasn't right. He had a "blinding" headache and was seeing flashes of light that evening. He woke up the next morning and couldn't move. He'd had a stroke. 

Anyway, on the show Andrew Marr spoke about how he has re connected with a hobby he had when he was a young child, drawing. He carries a notepad around everywhere with him and draws what he sees and things that inspire him and spark emotion in him, instead of writing these things down. 

He also talks about trying to live in the moment as much as he can. I think both you and I can take something from this. You never know what's going to happen, what's around the corner. 

I feel that Andrew Marr's and my story are similar in ways.. Both of our illnesses are most probably connected to exercise, although neither can be certain. Both him and I can not, for the time being, do something we love - exercise! Both him and I have had to find things that we can do whilst being poorly, his is drawing and mine is reading. 

However, I definitely need to take his advice and try to live in the moment! 

He inspired me and spoke some wise words.

Take care and try and live in the moment as much as possible,

Rachel x

The Dreaded Payback

After over two years I still haven’t got the hang of pacing myself. The doctors love to tell you to pace yourself and not do too much on your good days. However, I go against this suggestion time and time again and end up paying for it and being quite poorly and often am not able to get out of bed. I never know when my next ‘good day’ is going to be so I make the most of the energy I have there and then. The time following the energy-sapping event is not fun. But I am aware of this beforehand so I only have myself to blame (and this stupid illness!)

Yesterday I went to Middle Farm and then for lunch with some of my friends! We all had such a great day, laughing until we cried, being chased by chickens and hiding in bales of hay. It was lovely for us all to go on a day out together! I do not resent my day out in the slightest as I had lots of fun and enjoyed myself, but days out mean payback. This is a small price I have to pay if I want to have fun with my friends and I’m willing to pay it!

Today I am experiencing payback. I am exhausted. I know I’m always exhausted but I’m really really exhausted. I didn’t have an oxygen therapy session today, which was a blessing in disguise as I’m not well enough to leave the house. I managed to get from my bed to the sofa for a couple of hours and now I’m back in my bed. My beloved bed!

If I know I am going to do an activity on a certain day, I have got in the habit of reserving the next day as a bed day as I know I will be in even more pain, will be even more exhausted and even more fuzzy headed than usual. Having this system is no doubt bad for me. I should be reserving the energy that I have. However, if I didn’t go for a coffee at Starbucks with my friend or pop round and see my Grandad, I would feel even more deprived of life than I already do.

One day, hopefully I will get the hang of not overdoing things too much, but pacing doesn’t work in real life. Situations are constantly changing so you can never pace yourself completely but I would love to not have to reserve the following day as a bed day. Although, how do I know that day wouldn’t have been a bed day even if I didn’t enjoy myself at the farm? 

Take Care,

Rachel x

Pain Pain Go Away

A couple of weeks ago I had a really bad episode during the night and couldn’t get to sleep until gone five am due to the pain being so unbelievably bad. Usually I can deal with the pain I am in, I’ve got used to coping with it. However, that Thursday night I was crying pretty much constantly for over five hours. Mum was there to comfort me until the wee hours of the morning. I don’t know about you, but I always want my Mum when I’m poorly so I was glad she was there, offering leg rubs and a hot water bottle.

After phoning NHS direct and then speaking to the out of hours doctor, it was concluded there was nothing anyone could do. The strongest medication that the doctor carried, I have got used to, so no longer lowers my pain. The next step up from that medication is Morphine. He isn’t able to carry that. The doctor then told me that if I went to A&E they probably wouldn’t give me Morphine, as they don’t know me or know much about ME. I felt abandoned and given up on. It was fine for the doctor to say “just try and ride it out, try and go to sleep,” he didn’t have to endure the pain I was in.

I eventually fell asleep and woke up the next morning in considerably less pain. I have had to wait until today to get an appointment with my GP, he’s semi-retired, been on holiday etc etc! Anyway, today he gave me a small number of low dosage Morphine tablets. I am excited but a bit scared, (all the side effects). Anyone who has been in any kind of pain before will know how tempting a painkiller is! After being in pain for over two years constantly, imagine how tempted I am to take a Morphine tablet! I feel like a child resisting a sweet. Those tablets are downstairs and would (hopefully) take all of my pain away. Usually it’s the chocolate in the cupboards that call me, now it’s Morphine!! I know I must only use it for really bad episodes but when I don’t have pain relief day to day, they would bring me a very welcome break from the pain!

Take care,

Rachel x

Anyone Know The Date?

As I think I’ve said before, I never know the date, not even the year; I still think we are in 2012. I’ve thought about this and maybe I am in denial. Maybe I don’t want to believe we are now in 2014 because this means time isn’t standing still, it’s moving on and passing me by. I’ve been ill for over two years now and I feel like I haven’t progressed in any area of my life. I do not really feel like I am living my life. I don’t really enjoy many things now, I’ve had a couple of fantastic holidays and my amazing friends and family are around me and I love spending time with them but I feel like the period of time I have been ill for has stood still, and I wish it had in a way because I want this time of my life back. I want to be well and relive my very early twenties by partying hard and enjoying all of my hobbies. I feel like days are just passing me by and I haven’t done anything productive. I’ve watched a film and 2 episodes of Great British Bake Off. Well that’s not really a story for the grandkids is it?

If I look at my situation overall I know that this illness is teaching me lessons and building me into a stronger, more understanding “better” human being but its so hard to see that day to day. I’m not working, I’m not contributing to the world, I’m not passing any knowledge on to anyone, I’m just sitting and resting and it seems sometimes as though I’m worthless. I don’t have an identity, except I have M.E. That has become who I am. I was a gymnastics coach, I adored it, it was my passion and I passed on my knowledge and taught people my passion. That was who I was. I lost that and it still upsets me that I am not that person anymore.

I want to progress in life and I want my life to mean something. I hope with time, and lots and lots of sleep, my body will heal and I will be able make those memories that I can eventually tell the grandkids!   

Take Care,

Rachel.

New Year, New You – My Rethink

I think when I wrote my last post I was in a bad mood because it was quite pessimistic. However, I am now in a much better mood and trying to be optimistic. Kerri – my dear sister, read my last post and was complimentary but also gave me some advice. New Year resolutions don’t necessarily have to be fitness related. This hadn’t even occurred to me. I guess my brain is so focused on exercise and fitness still, that I didn’t even think about other goals that I could set myself that would be realistic considering my health.

Kerri and my auntie have suggested that I write down my M.E journey so far and continue to do this until, hopefully, I recover. My auntie said she would then turn this into a book. I am out of my depth when it comes to writing, I feel like I can barely write this blog, let alone a book! (With a bit of luck this offer still stands from my Auntie!! We haven’t spoken about it in a while!) This WILL be one of my New Year resolutions.

Another of my resolutions needs to be to sort out my diet. I know what I eat is not ideal for someone with M.E, however, knowing what is ideal to eat and eating what is ideal is very different for someone who can’t stand up for long enough and doesn’t have the energy to prepare a meal! I try to get my five a day and I drink a lot of water but if no one is around to make me any food I will leave it hours before I eat. Hopefully, with the help of a friend I am going to start eating more regularly throughout the day, and with any luck this will help my energy levels increase!

I hope all of your New Year resolutions are going well and you are sticking to them! Is it too late for me to make my resolutions? I’m only two weeks late! Those who know me wouldn’t expect anything less!!

Take care,

Rachel x

New Year, New You?

I am all for self-improvement, god dammit that’s part of the reason why I’m ill! I was so consumed in trying to improve myself; I forgot to actually take care of myself, leading to this horrid illness. Anyway, like I say, I love it when people want to improve their lives but please just stick to it!! Set a goal and try your very best to achieve it!

64% of New Year resolutions will make it passed the first month; only 8% will be successful.

I'd love to be making one of these resolutions like, I will start to exercise 3 times a week. Actually, I would like to be making a resolution such as, I will start to exercise everyday, but both of those are unrealistic for me. I get insanely jealous when I see people running along Brighton beach, practicing at my old gymnastics club, or even talking about going to the gym. Exercise was my life before I became ill. Although I am jealous about not being able to do these thing myself, I get even more annoyed when people say “I’ll start running next week.” Get up and do it for you and do it for me too please because I would love nothing more than to be able to go for a run along the seafront again.

As for the new year, if my friend hadn’t have text me to tell me it was new years eve I wouldn’t have even known. I never know what day it is, what the date is, what month we are and most of the time I don’t know what year it is either. I usually write 2012 if I’m writing the date down. I don’t really have anything to distinguish between days because often my mum has been to work and is back home by the time I wake up. Dad has crazy work patterns so I can't use him as a guide, so most of the time I use medical appointments to figure out what day it is, but really why do I care anyway? My pain and exhaustion levels don’t change depending on the name of the day or the year that we are in!

At present, a new year doesn’t mean much to me apart from reminding me that other people are setting goals, improving themselves and moving forward with their lives and I feel very much like I am standing still.

I received several lovely messages wishing me well for the New Year and hoping this would be the year that I start to get better. These were very touching and its lovely to know that people care so much. I really hope this is the year that I start to improve and I wish everyone else happiness and health.

Take care,

Rachel x