That one question we are asked by healthcare professionals, friends, family and nosy neighbours....

Friday, 27 July 2012

The dreaded brown envelope!

Yes dear followers I mean that moment when your stomach knots as you see a brown envelope in the post with DWP on the return address! It could only be one thing...the results of the Atos assessment.

So I was already in a strange state of mind having only just returned from London (see previous post) and I wasn't sure I could cope with any more emotional strain. I sat for a few moments going over the possibilities of what might be inside and what it would mean to me. A straight forward "Your claim has been rejected" meaning I would have to apply for Jobseeker's allowance and look for yet another job I would be sacked from. Thus entering back into the cycle of being behind with bills from either working a month in hand or waiting for the benefits to start up. Having to beg, borrow and steal, alright not the steal part ;-) as well as increasing credit card limits to simply survive. Next could be "You have been placed in the Work-Related Activity Group" meaning my benefit would be increased by around £40 a week and I would have to take part in work-focused interviews to "prepare for suitable work". The last being "You have been placed in the Support Group" meaning my benefit would be increased by around £50 a week. I would not be expected to work but may do so on a voluntary basis if I so wish. 

As I open the letter I scan through to see if I can spot the decision without actually having to read the letter. I saw the increase in benefit in bold and could hardly contain my excitement. I had been placed in the Work-Related Activity Group. This was realistically the best outcome I could have hoped for. I am not completely unable to work, just very limited and need the right support from the right employer. I really had prepared myself for the claim to be rejected after the many horror stories from friends, family and fellow Tweeters. The relief that the struggle for financial support had eased ever so slightly, that my condition had been taken seriously and they understood the effect it had on my life. I couldn't quite take it in, I had to re-read the letter at least twice from start to finish. 

I wanted to share this news with you not only to update my regular readers but to give a glimmer of hope to the people fighting the ESA battle!

Are you waiting for your decision letter or have you already received it?  

Take care for now

Marie x

Wednesday, 25 July 2012


Expectations can fill us with hope, excitement, fear or dread to name just a few emotions. My general rule of thumb is always expect and prepare yourself for the worst and that then leaves room to be pleasantly surprised.


I attended Guys Hospital in London, to see a Professor specialising in Fibromyalgia and ME following a recommendation from a fellow Tweeter. I had allowed myself to believe this could be a life changing experience, that he could "make me better". Now of course we all know there is no cure for Fibro, only ways to manage the condition.

I awoke yesterday morning like a child at Christmas, hopeful that the unknown would bring joy. After a sweltering two and a half hour drive with what is possibly the worlds most useless Sat Nav we reached our destination! As I nervously waited I checked I had all the necessary paperwork for the hundredth time.

Said Professor called me in, opened my file and starts with "Oh, you've already been diagnosed, when was this?". I then proceeded to explain that I was diagnosed February 2011 at Addenbrookes despite having pain for many years etc. etc. He then did the usual "Can you touch your toes?" "Does it hurt when I press here?" and confirmed the diagnosis of Fibromyalgia and decided a change in medication was the next step. I then asked a few questions and was sent on my way.

I really wasn't sure what to make of it all. I don't really know what I wanted him to say or do, after all he doesn't have a magic wand. I guess I just hoped to have more than ten minutes of his time. That we would have had more indepth conversation even some profound advice perhaps, being a specialist and all. I left feeling rather disappointed and deflated.

And so I shall wait for the letter to be sent to my useless GP before making an appointment and trying his suggested medication change.

I decided to visit a relative of mine who was currently in Kings College Hospital, where he was receiving possibly the best NHS care I've seen in any hospital. It is not yet known exactly what happened, possibly a stroke or an infection on the brain. Last time I saw him was on the Liver Intensive Care Unit as he is an alcoholic and had just come round from life support.

I again set my expectations higher than perhaps I should have. I thought I would see just a bit of my good ol' uncle Alan back, don't get me wrong I wasn't expecting miracles but what I found was merely a shell of the man I remember him to be.

Sat on the edge of the bed, head in his lap, I spoke gently to him though he could speak no real words back I hoped he could still understand me. As I spoon fed him his now cold lunch, I could feel the tears glazing my eyes which soon rolled down my cheeks. If he could see just how poorly he was to be would it have changed anything? Would it help to break the grasp of the addiction? I said my goodbyes and left him to get some rest.

The drive home was quiet, I felt drained. I didn't feel I wanted to cry or even to talk. Just to be still within my own thoughts, not that I was even sure what they were!

Expectations - set them low and aim high or set them high and aim higher?

Take care for now

Marie x

Monday, 23 July 2012

Off to London in the morning...

It's the night before my appointment with the Professor at the Fibromyalgia clinic in London and so I am trying my best to prepare. I feel as though this is my one chance to be taken seriously in regards to the pain and daily struggles. It's potentially a life changing opportunity.

I have written a list of symptoms as advised by a dear friend who suggested the clinic to me, quite depressing when you see them listed in black and white. Trying to take a more positive and proactive stand I then wrote a list of what I hoped to gain from tomorrow. 

I'm desperately trying not to get my hopes up too much but I can't help it. I don't remember the last time I felt so optimistic before an appointment!

I thought I would share these with you. As the symptoms of Fibro can differ so greatly from person to person I find it an interesting point to discuss, maybe that's just because I'm nosey! 

I will now try my best to get some sleep as it will be an early start. I'll be sure to update you tomorrow when I get back from good old London town!

Do you have any experience good or bad of "specialists"?

Take care for now

Marie x

Saturday, 14 July 2012

That Friday feeling!

For the first time in a very long time, I felt truly alive.

I woke up Friday morning positively charged, absolutely buzzing and smiling from ear to ear. I was pain free and felt I had the strength to swim the Channel. I had no idea where this feeling had come from but I knew that it wouldn't last long so I needed to make the most of it by being as productive as possible.

I set about starting those chores that I had been putting off. Within no more than ninety minutes I had washed up, cleaned the kitchen, stripped the bed, tidied the lounge, hoovered all rooms and put a load of washing on! I know, I know, hardly pacing myself but I simply couldn't help it! It was as though watching a video whilst fast forwarding it. I had all this pent up nervous energy and I just needed to let it out.

During my cleaning frenzy I sent William (the boyfriend) a message saying how full of life and vitality I was feeling and that I wanted him to come over so we could go shopping. Nothing beats a bit of retail therapy ;-) Unfortunately he did not see the message in the positive, spontaneous manner I had sent it with. He very rightly pointed out that as neither of us are working at the moment money is tight, we shouldn't be wasting it on unnecessary car journeys and frivolousness shopping sprees. For a change it was him being the sensible, level headed one but while I could see things from his perspective, I simply did not care about being responsible. For once I wasn't walking snail pace around my flat, counting down the minutes to the next painkiller or trying to hold off the next nap for as long as possible.

Every day I worry how I'm going to pay the next household bill or put food on the table. I live in fear of that moment the cashier at the petrol station tells you that your card has been declined and you just wish the ground would swallow you up whole! This God awful Government are making life near on impossible for us Fibro suffers. In fact I think they almost want to push us over the edge, one less strain on the NHS Resources! Ok, ok, I've gone off on a tangent slightly...sorry about that. I shall try harder to focus ;-)

Now where was I...

Oh yes...I had no time for logic or rationale. As usual my mind ran away with me and started asking a dozen questions per second; why could he not understand my spontaneity? Why was he not pleased that I was abundant with energy and happiness? Why was he angry with me for wanting to do something fun? Why did he not want to see me? Did he have some thing better to do? 

Inevitably the messages to and fro led to an argument as we were both reading from very different pages. The bickering, name calling and shouting lasted a good four hours and saw me crying curled up on the bed, which by now I had now put clean sheets on. Once we had both calmed down a little I got in the shower and he headed over! We had a lovely afternoon wandering around the shops, luckily for the poor old credit cards nothing much took our fancy other than a pair of wellington boots for me and some socks for him. We retreated back to William's house for a relatively quiet Friday night. This wave of energy has been relentless and so I have not slept other than the odd five minute doze and it is nearly 8:30am Saturday morning!

And so my dear readers I write to you now as the rest of the house sleeps soundly upstairs wondering what it is that allows us to feel such strong and sometimes conflicting emotions towards a single person? Could it be that thin line between love and hate?

Take care for now

Marie x

Friday, 6 July 2012

And so the assessment is over...

Wednesday morning I had my ATOS work capability assessment, oh joy I hear you say! I was ever so nervous first thing as this was my first assessment and therefore was unsure of what to expect. I had only heard horror stories via Twitter and the like but never any good experiences. I went in with no expectations other than they would fail me as I heard this is what happened with other fibro suffers.

During the assessment I had many questions fired at me in quick succession which did make me feel rather uncomfortable. I was not given time to think or even finish saying my answer! I went armed with lots of medical paperwork including letters explaining my diagnosis from both my rheumatologist and mental health team and discharge papers from hospital, yes I really do keep everything! However when I offered them to the assessor she was very blasé and I almost had to force them upon her. It was as though she had already decided what she was to write in her report to the DWP.

I was then asked to take part in a physical examination...this caused me great discomfort and pain. This involved me laying on a medical couch and lifting one leg and bending my knee, rotating my hip outwards. This ended up with my left hip "popping" The assessor seemed totally unfazed and just continued as normal!

All-in-all the assessment was over in thirty minutes, much quicker than I anticipated. As I hobbled back to the car with a rather sore hip and extremely stiff back (you'd think they would make the seats a little more comfortable for us "disabled" people) I was unsure what to make of it all really. I didn't know how I should feel or what I should think... I didn't feel relieved as I couldn't tell what the assessor was thinking. Did she understand the extent to which fibro affects me on a day to day basis? Did she think I was "putting it on"? Did she recognise just how hard I have tried to work for the last 5 years?

After being told it would be three to four weeks before I receive a decision the ATOS battle is far from being over yet!

How did you find your assessment? How long did it take for your decision to come through?

Take care for now

Marie x

Tuesday, 3 July 2012

Just under 12 hours to go....

So tomorrow is D-Day, the oh so wonderful ATOS Assessment! 

Again I shall start with an update - The doctors appointment yesterday wasn't very productive, he simply said "What can I say in a letter that you can't tell them in person". I then decided to ask for a print out of my medical history with dates and brief description of what was discussed. After three visits to the surgery I eventually got this.

I had my mental health appointment this morning, for which I had to wait thirty minutes. This only added to the stress level. I'm not sure what to make of it all yet, I guess it's just a waiting game now. Yet another letter to keep an eye out for in the post!

I have spent the day preparing for the assessment, I have read many documents and blogs, fished out all relevant paperwork to take with me, spoken to others who have been through the process already. I must say that so far it does not sound good. A family member of mine had an assessment in January and is still in the appeal process as they did not take into account that his condition was fluctuating. Now this is something that concerns me greatly, as fellow fibro suffers know the condition is completely unpredictable and varies from hour to hour, day to day. One day I may not be able to carry out a simple task that I could the day before. How can they judge whether I am fit to work or not based on a 20 - 60 minute appointment? How could they possibly say I was fit to do a 40 hour week? I have tried and tried and had more jobs than most people ten years my senior have. This is not something I have made up, this is not something I can control, this is not how I envisioned my life to be. I understand that I am unreliable and therefore a hindrance to any employer but this doesn't make it any easier or less stressful. It certainly doesn't make the DWP any more understanding either. You are nothing but a statistic to them.

So as I become ever more nervous as the hours tick by I am beginning to wish I had moved away, out of this country. Away from this ridiculous system. I am a human being, not a lab rat and definitely not just a number on someones books! From what I have gathered I am going to fail tomorrow's assessment and have to appeal the decision. It really is enough to make you want to give up on life. I would love for those who think they are high and mighty spend just 24 hours in my body, feel my pain, suffer my depression and battle my fatigue.

Any last minute tips?

Take care for now

Marie x 

Sunday, 1 July 2012

Insufferable Sunday

After a fairly uneventful and quite relaxing few days today's pain and misery came almost by surprise.

I shall start again with an update - I received a phone call this afternoon from the Mental Health Team, very odd for a Sunday, to be asked some questions to see who best to refer me to. He was quite a pleasant man, however he did come out with "well your tone sounds optimistic" which was nearly as good as the time a psychiatric doctor told me I was "too smiley to be depressed". It really does make you wonder if they're actually trained to deal with mental health patients. As I calmly (yes I know that's not like me) told said gentleman after 11 years of battling depression I have mastered the art of "yeah I'm fine thanks" *smiles* Anyway I now have an appointment on Tuesday so we shall wait and see what comes of that.

My day started very early, 6:30am to be precise, when I was woken by excruciating pain. It did not matter what position I put myself in there was no escaping it. I have put it down to just a severe bladder infection causing a terrible stomach ache and a burning sensation that lasted a good five hours! 

Although this pain has subsided throughout the day the muscle pain in the back of both my legs has not improved an awful lot, despite plenty of codeine and even a bit of Tramadol. 

Needless to say that today has been a duvet day. Other than hobbling to the bathroom and back I tried to sleep to avoid the pain both physically and mentally. I felt imprisoned in my own flat, which wasn't helped by the fact I had no good food that didn't require any preparation or cooking. I felt utterly helpless, not even being able to conjure up the strength to change my now very sweaty pyjamas.

The only thing I have found to have helped my legs was a super hot bath. One should always be careful not to scold oneself when using this method and it's always a good idea to take a cold glass of water to drink with you.

So that was my day! Tomorrow I have my GP appointment to seek advice regarding my upcoming Work Capability Assessment on Wednesday. 

What supporting documents did you take with you? Did you believe it helped and/or resulted in a fairer outcome?

Take care for now

Marie x