Living in a Dark World - ME Awareness Week 2012

Please bare with me on this post. Drugged to the eyeballs on my medication due to pain so somethings may be a little confusing or not make sense so pop a comment at the bottom if you're not sure...

In Sickness and in Health: A Hidden Vow of Friendship

Hey everyone,

Believe it or not, I have deleted and rewritten for this post several times. I can't seem to quite decide what I truly want to come out with. Instead I realised I need to write from my heart, as it's the only way I can explain what friendship means to me.

In the past few years especially since I developed M.E., I have come across some amazing people. It astounds me the goodness of human nature in so many people and I feel blessed that many of these beautiful people I have come across, have become my friends. It also shows me that the internet can be used for good so that in the event of chronic illness and being stuck at home, it doesn't make you isolated from people. Things like Skype, Facebook and MSN/Live Messenger have been a Godsend and have saved my sanity. I also would like to think that I have also repayed the favour back for people and hope that I have been patient and listened to people and given good words of advice.

Having a chronic illness is extremely difficult but from the emails, comments and Facebook messages that I received back following one of my previous posts asking for opinions, it is clear to me that people have said that without the internet they wouldn't have been able to come across other people who truly understand what it is like to live with a chronic condition (in this case, especially M.E.).

I have lost old friends. Basically every single one I knew before I was ill, except for a handful who have stood by me all the way.  In some way, I don't blame people for walking away but in another way, I feel hurt that just because of something which happened that wasn't my fault, they couldn't "handle it" and instead of being a friend, they decided to take the easy route and walk away. I don't know if it was because of boredom that they knew I would probably keep turning down invitations or not be able to stay out long. Instead of being the life and soul of the party, I became the "party-pooper".
However, for every so-called friend I lost, I seemed to have gained 2 more. I have found that the meaning of friendship has changed. I feel that the bonds I have made are much stronger and filled with patience and understanding of each other and what we go through. The friends I have made range from America to Australia. I am astounded that people who have never met me face-to-face, take the time even just a moment to say hello. I was even more astounded that at Christmas, I received so many beautiful gifts. I was even more surprised that on my birthday at the beginning of the month, I received countless cards, gifts and one gifts that meant so much was a scrap book with loads of of beautiful messages from people who know me through my blog, AYME and Facebook. What surprised me more was that the people who had left me a message, I had at some point spoken to them. Whether it was them sending me hugs when I have been low, or spoken to me on Skype or for countless hours been messaging me on Facebook or Live Messenger.

I am truly blessed and grateful for every single person in my life who has been there. You will never know just how much it has meant. Without you guys, I can almost guarantee that I would still not be alive today. Most of you who will read this know how difficult it is to go through a chronic illness and even worse, be housebound/bed bound shut away from the outside world. However, the simple thoughts, messages and letters are what have kept me going regardless of what I am going through.

For that I am truly grateful and in return I would like to promise that through sickness and in health, I will support every person who has supported me in my darkest days.

All my love

Share and Care: Raising Awareness of ME

Hey everyone,

Just wanted to share this video from the amazing Daisy. She is a fabulous person that no matter how poorly, she continues to raise awareness with her Youtube clips :)

Please share on Facebook, Twitter, Emails and Blogs!!! :D



Lots of love,

Trains, Tribunals and Tribulations

Hey everyone,

Firstly, I want to deeply apologise for not posting on here in several months. For those who follow me on Facebook, you will know that recently my health really has been having a go. I have also had to go through bereavement, countless doctors appointments and countless days in bed with very little energy to write a blog and therefore have had to keep putting the smaller things off, to ensure I have been able to keep up with the more important things.

As this blog post is probably going to be pretty long, I have titled the different sections so you can skim-read through if you want or simply read a bit at a time as I know it can be difficult from personal experience to read everything in one go. If you read it in one go, I suggest a big cup of coffee/tea and a packet of biscuits!

LEE EVANS GIG

The day after the last post I wrote, I said I was going to see Lee Evans. I have to say that the actual gig was brilliant but was in so much pain from laughing so hard! Also for the first time ever I wore high heels! 

   I went with a friend for the first time in a manual wheelchair and although since then I have been more confident in going in a manual wheelie (I usually use an electric wheelie when I go out shopping), it still wasn't without so many problems. Within 5 minutes of leaving the house, the person who came with me started complaining about pushing me, so found by the time I reached the London O2 Arena from the other side of London, I was pushing the chir myself! She also went and decided to not come home with me as planned but bugger off to the pub so had to make my own way home with a bloody wheelie without anyone to push! Got a taxi safely but all the same it reminded me how vulnerable I am outside my house which made it very hard for me.

    During the following weeks after the gig, I had a relapse (not a huge one) and was bed bound for  while. However, I didn't regret at all for going.

I understand that many people would say, well if you know you are going to end up pushing it, then I shouldn't go to these things but the thing is, what is it worth living for if I can't enjoy myself once in a while? It is all great to try and stay as healthy as possible but every so often, you have to say "bugger it" and just try enjoy something. It's the only way to get through the darker days. I found many days especially during relapse, it is very easy to spiral downwards into depression and self pity (there is nothing wrong with self pity - sometimes you need to have those days - and I found thinking about lovely things I have done, makes it all the worthwhile through darker days.

A&E AND HOSPITAL APPOINTMENTS

On 14th October - a week before I went away - I ended up in A&E again as I got an infection which caused my seizures to go haywire. I went to a different hospital to last time as I explained I was treated awfully (see my previous posts). When they did an x-ray to check for chest infection they said they saw a bit in my chest but didn't give me any antibiotics even though I was coughing up nasty green stuff and due to my temp and heart rate, they had to give me paracetomol and stick me on a drip. The day after, I went for an emergency appointment to GP who gave me antibiotics and it stayed for several weeks which caused a minor relapse before going on holiday.

   I had a huge seizure and when I came round I didn't even know where I was and what happened. When I came round from the seizure, the doctors and nurses walked away. I was really distressed. No one held my hand or explained where I was or what happened. I don't expect Dr's to baby me and treat me like a child but when you have something as serious as a seizure and no one is there with you, you would expect for just a nurse to explain what's going on. I realised that I just need to try and avoid hospital as much as possible.

Since that particular time, my GP and another doctor brought up bout the possibility of me having MS. I was then sent to a new neurologist (I haven't seen one in a year and the last one was useless in my book). This particular neurologist quickly shooed away the idea of having MS based on what's been happening so have breathed a sigh of relief but in some ways because of this, I am starting to lose my respect for the information or diagnosis that they come up with. I have found that ever since I got Grandmal Epileptic Seizures, I have been told one thing then it changes to another. It was at a point about 5 years ago I was told all my seizures were non-epileptic and that they were caused by stress/anxiety attacks. However, it's been confirmed as epilepsy since late 2010 when a seizure caused me to stop breathing and I had to be brought back to life. Also the backing up that when I was taken off the Epilepsy medication I had been put on for several years, it was found my seizures increased. 

   Also as many of you will know it is a scary thing to have ME/CFS brought up with medical consultants, many of them are sceptical about the diagnosis and will either fob it off as a "somatoform disorder" (basically it's a mental health illness), another group will say it is a neuro-immune disorder (as stated under the World Health Organisation guidelines) and the rest of the doctors will state that ME/CFS doesn't exist whatsoever. Hence for me personally, I am finding it hard whose advice to take and who to believe. I don't think anyone truly knows. If they did, they would at least be able to be sure exactly what causes the symptoms but it feels now a lot of the time I am getting fobbed off between consultants and that any doctor that is attempting treatment is doing it with a blindfold on. 

  However, because of such a delay and my seizures constantly making me worse, it has now got to a point where my body is really struggling. I am struggling to walk far and if I walk more than a few steps, then it's not done without severe pain, cramps and fatigue. Also the spasms are a daily occurrence. At the moment, the medication is keeping the severity of it at bay but I am having more breakthrough ones where it is extremely painful and can keep me up for days at a time. I still have severe muscular pain 24/7. For those who don't have Fibro type pain with spasms on top, the only way to describe it is pure torture. Lying in bed for hours and being helpless as a fish out of the fishbowl makes you feel so vulnerable.

  Due to these episodes, I am having more relapses and also more occurrences of full or half-body paralysis where I literally can't move and have to lie in bed til it wears off. However, it then seems to trigger other symptoms and now in the past few months my feet have started to curve in. It is constantly painful due to the cramp it's causing.

Back to explaining my neurology appointment, it seems to be that the doctor agrees with the Epilepsy diagnosis and also ME/CFS, however, I am now being referred to a neuropsychiatrist. They are hoping that in terms of helping me mentally that they can then help with the physical aspects as this illness has got to a point of wearing me thin. It is a lot harder as my family are not supportive and are getting on with their own lives and my own mother still denies the fact I am ill or chooses to try to ignore it. Also the neurologist thinks I have an unknown Neurological condition on top of everything else and if it can be diagnosed then I have some chance of maybe being able to get better. However, he explained it's likely they won't ever know what it is and therefore it's unlikely I will ever recover fully. Since then, it has been recommended that I get inpatient treatment sometime during next year for intensive physio and medication treatment alongside seeing some form of mental health therapist to help me cope with my health. I have now got to the point where I am hoping anything will work to make me better. I am just scared of throwing all my precious energy and hope into this and find it doesn't work for me, that I then will struggle severely to take that disappointment. I have realised though in some ways, if I decide not to go then I may lose a chance even to get better.

For the time being though, due to PCT funding issues/applications, it won't be for a while and therefore will have to make do in seeing a Neuropsych and the Neurologist in outpatients for the next few months and emptily hope that I will get even a few answers or some extra help.

TRIP TO SCOTLAND

I went to Scotland for 2 weeks towards the end of October to see my mum and her partner. I have to say it was the first time ever of being with my mum for more than 3 days without an argument ensuing between us! The weather started fairly chilly but by the end of the holiday it was freezing. A few days before I was due back, it was absolutely eerie with so much fog and mist all the way to the ground and I couldn't see any more than about 10 metres in front of me! It was very tranquil though and much needed. I know a few people may be confused as to how I get all the way to Scotland when I'm bedbound most of the time. The train I use is a sleeper train so it means I can lie in a bed the whole journey. I have to admit it is noisy and can be painful as it caused my spasms to have a go but it is pitch black and if you stick ear plugs or noise defenders on then it's easier to cope with which is what I do.



 This slide will open a new page to load and show the slide. All photos were taken by me :) 

However, it was definitely worth it. I got to see  firework display from my mum's neighbour's garden which was awesome as it took a lot of energy to stand at the garden to watch for 5 minutes. I was very proud of myself as I had ended up having spasm lock most of the day and stuck in bed.

   Mum took me to a craft shop and bought me a dolly set to make. It took me a week to do it but I thoroughly enjoyed seeing the finished piece. I also got a lovely set of curtain for my room which are now up and they shimmer in low light and look like stars.

  I was also at my mum's for Halloween. I was on my own and only the neighbour's children came to get sweets. Although I didn't get dressed up, I did really cool makeup with stars and wore fake eyelashes that were silver. It took a lot of energy though so had to rest the following day.

  I was very proud that I went for a very very short walk (on my crutches obviously) in the woods and took loads of pictures. It's in these moments that you have to remember why we fight so hard to live. I keep hope in my heart as much as possible to get me through each day.

DLA TRIBUNAL

As some of you may know, I have been battling it out for the past 17 months since I let them know about the diagnosis regarding ME, Fibro and Arthritis. I was already on Disability Living Allowance (DLA) but was trying to fight the fact that I could barely walk and felt that under their guidelines, I was entitled to the higher mobility. After filling out 3 forms totalling in 54 pages which was sent in July last year. However, due to them not contacting my GP til 4 months later in November, they did not make a decision regarding the change of circumstances until January of this year (6 months after I sent in the forms and paperwork!) and was told that they would not change the current rate of DLA I was on.

  Following this, I sent in a very long appeal and asked for it to be sent directly to the Independent Tribunals Service but due to their waiting list, I did not get seen til last month. For those who have been through the Tribunals avenue of appealing for DLA or ESA, you have a hearing with a lawyer, doctor and disability discrimination specialist. I was in the room for about 20 minutes, ended up in tears because they stupidly asked me how my condition affects me emotionally. I just was at a loss of understanding how they could not even grip a little common sense as how they would feel if they were in my shoes. At the end of the hearing, they then said they couldn't make a decision because they didn't have sufficient information even though I supplied them with paperwork when I sent my Change of Circumstances form in and also when I arrived at the hearing with details written by the consultants I had seen explaining my physical well being. I felt so frustrated by the fact that I was told to wait another 8 weeks for the outcome at a following hearing. Although my hopes were raised because they didn't deny the increase in DLA on the spot, it still was difficult as I had waited 17 months and been nervous about the whole situation.

However, only a few weeks later on the first week in December I received a letter and read the first line saying that the appeal was no longer being pursued and then read that it was due to the mobility rate of DLA was being increased to the higher level. I was dumbfounded that finally I got there in the end.

What was even better, is that the Department of Work and Pensions who sorts out DLA had to back pay me for 18 months worth of waiting! So now I have enough money to be able to get myself a new laptop and go to Mexico (obviously if I am well enough to take the long trip there).

It shows although it is hard to wait so long and fight so hard simply for something that is provided by the government to help those who need it, it is worth trying to appeal with the Independent Tribunal Service as they are unbiased regarding the decision they make as they do not work commission. Unfortunately in the DWP, it is strongly suggested that the doctors in particular get a commission for each DLA application that is refused due to the medical information given. If this is the case, then it shows a serious flaw in the system, yet it would explain a lot for the outcome of many applications for DLA and ESA (Employment Support Allowance). Further to this, as it has been reported in the news over the past year since the cutback of government funding to different major departments such benefits and NHS etc. the disabled community are getting more and more worried how this will affect us in the long run. I probably am not the first to say this but yes I am concerned what my future holds regarding this as I live on my own ad therefore completely rely on the government for every part of my income. I only hope that the system improves for us rather than being made more difficult by being subjected to extensive medical assessments through ATOS. 

Speaking frankly, I think that if we made the MPs try live off the income we receive, they would have a huge struggle into being able to spread out finance ensuring that all their bills were paid and this isn't even counting the chronic conditions we have to suffer with as part of our lives.

BEREAVEMENT

In late November I went to a Christening and I officially became a Godmother to my beautiful Goddaughter born earlier this year. Unfortunately, during the Christening party after the service, as I was posting a picture of myself and my Goddaughter in my personal Facebook page, I saw something I didn't expect. One of my close friends who I have known for 5 years and who was there when I went through severe PND following the loss of my daughter, had been killed in a car accident after her car strayed off the main road into a field and turned over. She died at the scene. The police still have no idea what happened as it wasn't a crash with another vehicle so a current inquest is ongoing at this time.

  Since then, I was truly struggling in the first few weeks as I was upset that several mutual friends didn't bother sending a text or calling me instead of reading this sort of news on facebook.  I have to admit, the pain has started easing slowly but due to my illness, the amount of friends that have kept in touch or been close is few and far between. I am sad I didn't get a chance to go to the funeral as I was told about it after it happened, but I know in my heart I wouldn't have been able to go as I have been very unwell.

VOICES FROM THE SHADOWS - RARE VIEWING AT THE BRITISH LIBRARY

A few weeks ago, I was lucky enough to get my hands on a ticket courtesy of a fellow ME'er to a rare viewing of Voices from the Shadows at the conference centre at the British Library, London.

  For those of you who are not sure, it is a documentary based on the lives of several young people with severe ME. It was clearly a documentary aimed at medical professionals and those who are oblivious to the treatment of those who are labelled with ME.

  I have to be honest that it was very hard hitting and I really wouldn't recommend young ME sufferers (especially children or teens) to watch it as the film shows some very distressing scenes.

During the film, grown adults were crying at a lot of the scenes.

After the movie, there was a question and answer with Dr Speight, Declan Carroll from the Irish ME Trust and a Camden Labour Councillor. It was goo insight about the current views and what the government are doing regarding disability and ME cases. However, he was quick enough to leave for another meeting he had to go to so we weren't able to ask many questions.

I also have to mention that Sophia Mirza's mother was in the audience and in fact it was a pleasure to see her in person as she stood up and spoke about the documentary as he daughter was one of the features.

During the questions taken from the audience, I was brave enough to ask regarding who should be accountable for the wrong labelling of CFS and that it had been stated to me personally (and obviously to many other people there who had been treated under neuro-psych and other related departments) that it was a mental health/psychological issue rather than a Neuro-Immune Disorder as recognised by the World Health Organisation. It has been understood that the medical profession should be following these guidelines but it seems that is not the case. Further to this, regardless of the proof that GET and CBT are not the way to cure patients and in some cases can potentially be harmful, yet it seems most British Doctors are ignoring the guidelines as tey have been taught that ME/CFS is based as a Somatoform Disorder. Due to this, ME patients in the UK are nowhere nearer to having hope of a cure.

I have found a very good review on this viewing t the British Library by a blogger called Matthew Smith (also know as Yusef) so I reccomend having a read as it holds more information regarding the film. Have a look on: http://www.blogistan.co.uk/blog/mt.php/2011/12/08/review-voices-from-the-shadows-british-library-london

Below is the trailer of Voices from the Shadows

To visit the dedicated website please go to: http://voicesfromtheshadowsfilm.co.uk/

Please also visit their Facebook page at: https://www.facebook.com/VoicesfromtheShadows

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Unfortunatly, the past few days I have been extremely unwell and have dropped to about 15-20% functionality. I have had to stay in a dark room although I am able to use the laptop every so often. However, my body especially my legs are in severe pain and every few hours I go into paralysis for an hour or so. I am very weak and can barely sit up. It has become scary that my body has decided to go into relapse but I have a feeling that it's been caused by overdoing it at Christmas and doing quite a few things and going to see Lee Evans etc. in the past few months and it's caught up on me.

For those who don't have ME, this situation can be the reality of those with ME (especially severe cases) and it can end up becoming like torture. I just want to get better. That's not too much to ask. I only hope that if I do get in-patient treatment as planned in the new year that it may help even if it's just a bit. For me it may be the difference from lying in bed 95% of the time, to maybe going to college even if it's in a wheelchair.

I want to achieve so many things. I have so many dreams and so many wishes yet because of this horrible condition, everything is on hold. I constantly feel like I am stuck in limbo until something happens. I will admit that some days I don't want to wake up at all. It not necessarily depression but facing the horrible reality of being so ill. I want to fight this this so hard. I still try to hold onto hope but it's at times like these that hope fades fast and the light is almost out completely. I found though that because people send me letters and cards and presents, it reminds me there is good in the world and also that I am not alone in this fight.

I want to thank everyone so much for my beautiful Christmas cards and presents. In all honesty, every single one is truly appreciated. They are beautiful and I can't wait to make some of the craft things I have been given.

Things like these are priceless and mean so much. In these small gestures, it keeps me wanting to fight my conditions and in that hoping I shall win in the end.

p.s. sorry this post was so long and if you have read the whole lot I admire you as it has taken me over a week to write this!

Love you loads

Project Butterfly:Winner!!!

Hey everyone,

thank you for sending in your entries for the Project Butterfly competition. Although I didn't have as many entries as I anticipated, the ones I have received are way more beautiful tan I thought they would be.
I can clearly see the thought people have put into them, and some even with beautiful words or even using different things such as pens, glitter, to smiley faces and lovely words. It means a lot and I am really impressed.

I want to show you the entries I got... they're in no particular order except the winner is the last picture...


Butterfly by Katie L.



Butterfly by Chloe M.



Butterfly by Chloe M.



Butterfly by Chloe M.


 

Butterfly by Crystal S.