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

Tuesday, 30 October 2012

Aches, pains and itchiness!

As winter sets in I have definitely noticed an increase in my fibro flare ups. The combination of the cold damp weather and my lack of heating facilities is making me feel more like a woman of 81 than 21. I have now gone back to taking the Duloxetine in the evenings but the new GP has doubled the dose; I am not sure if it is this or the Pregabalin that is causing some rather unwelcome symptoms.

My sleep quality has unfortunately deteriorated which is resulting in me feeling much more tired during the day, affecting my ability to carry out day to day tasks. I have lost the oomph that I had first thing in the morning when taking just the single dose of the Duloxetine. Now feeling very unmotivated and quite down the last thing I needed was to be incredibly itchy, everywhere! With no change in washing powder, shower gel etc and no sign of insect bites I can only conclude that it is a side effect of the medication. I will persevere for a little longer with the meds in hope that the above eases.



Following a somewhat disastrous time of things with the mental health team lately I have now been assigned a worker. Not really sure what it is that we will be doing together mind you but will try to remain optimistic and open minded! My first appointment is this Friday morning so I shall be sure to update you with any news. I also have received at long last my hospital appointment to have my jaw looked at in December, it's only been three years since the major dislocation! Good ol' NHS ;-)

Finally, just a quick update on Mr "Yummy"... Turns out he's just a bit of an idiot! Having dealt with a particularly sneaky lying man I know the tricks and tell tale signs all too well and I certainly won't be putting up with that again. It's a shame as he seemed perfectly wonderful, too good to be true in fact. As my nan would say, "Men are like buses, another one will be along in a minute!".

Have you had any bothersome side affects to medication? If so, how long did you put up with them before trying an alternative?

Take care for now

Marie x





Tuesday, 23 October 2012

Meeting someone new

So cutting ties with William also was a sign that I felt able to move on and enter back into the world of dating. I think I speak for many when I say it can be somewhat difficult to meet anyone new that's worth dating; lets face it, a very drunken flirt on a Saturday night out is hardly the basis for a long lasting relationship. Despite previous bad luck I decided once again to sign up for internet dating!



As I wrote my profile I struggled with what to say and wondered at what point it was best to drop in "Oh yeah by the way I have a muscle disease!"? I guess there never really is. I like to go with the honest and upfront approach, nothing worse than developing feelings for someone only to tell them of your condition and they run a mile! In which case they weren't worth knowing anyway. Accepting this can be easier said than done though. I decided I would cross that bridge when I came to it, which would generally be when asked, "So what do you do for work?" and my response would have to be "Well, actually I don't work at the moment...".

After chatting with a few young men there was definitely one that caught my attention, in fact I couldn't believe he had sent me a message...the word yummy instantly came to mind ;-) He's certainly out of my league, even if he does hate me saying it. We swapped numbers and began talking and arranged to meet up! The closer it got to "date night" the more nervous I became. The butterflies in my stomach were out in full force, quite an unfamiliar but very exciting feeling. The date went well, we had a lovely meal and a glass of wine or two. We have spoken every day since and are aiming for a second date next week. *fingers crossed*

And so as I enter back into the world of dating I am trying not to be too naive and to remember Rome wasn't built in a day!

Have you ever partaken in the internet dating scene? How did you find it?

Take care for now

Marie x 

Thursday, 4 October 2012

More meds!

Continuing on the positive and productive theme I have started on another new medication, found myself a new GP, am attending a college course and have finally felt ready to cut all ties with William.

So I shall start with the medication and GP. After no end of problems with my GP I decided it was time for a change after finding out he had not even sent a referral to a specialist that was requested over 2 months ago! I had my first appointment with the new Doctor yesterday, it went really well. She was very understanding and very proactive. Upon her request I shall see her regularly until I am more settled as well as being referred back to the mental health team. Onto the meds...I have now been told to take my Duloxetine in the mornings instead of at night and have been prescribed Pregabalin (Lyrica) to take before I go to bed. Having read the information leaflet, as I always do before taking any medication, I must say there were some strange side effects listed as well as the usual headaches, weight gain etc. I shall give you just a few so you know what I mean: abnormal style of walking, swelling of the body including extremities, change in perception of self and abnormal breast growth! Sound fun don't they?! ;-) All jokes aside for a moment, I was rather nervous taking my first one last night although touch wood, I have been very lucky in the past and have never suffered too badly with side effects. I had the best nights sleep I have had for months. I slept straight through until my alarm went off this morning, I was amazed. I did feel a bit groggy and my eyesight did take a good fifteen minutes to return to normal; everything was spinning a little and was slightly fuzzy! I'm sure this will go in time. The first night was a success as far as I'm concerned and I hope to have another sound nights sleep tonight. *fingers crossed*



I started a college course on Tuesday at a local college called the BEST course which is Basic Employment Skills Training. This is a compulsory course which I must complete before I can move on to a relevant training course under the Jobcentre rules. We have been looking at various aspects of looking for work and the best ways to do so. We also had to complete two assessments, one English and one maths, it was like being back at school! It's surprising how much you forget. My adviser at the Jobcentre told me the course was just half a day when in fact it is three days this week and another three next week. Not only this but it is 9:30am to 4:30pm each day, needless to say my body wasn't quite prepared for this! Early mornings are something I particularly struggle with as I'm sure many other fibro suffers find too, but I have pushed myself to go in each day on time. Allowing myself plenty of time is really important to me not only physically but mentally. I hate being late for anything and always leave the house far earlier than necessary but if I don't do this I get very stressed and as we all know stress can bring on killer fibro pain. Anyway, back to the course, I am finding it really useful, the tutor is fantastic and I am looking forward to whatever course I decide to take next!

Finally just a short bit about William. It's been almost two months since we split and I have been finding it very difficult to cope at times which he is fully aware of. I have tried to keep contact to a minimum due to this but unfortunately he sent me a message this week, early morning, asking if I wanted to go away for the weekend with him. I then spent the whole day remembering all the little adventures we had been on and the wonderful times we've had. By bed time this had inevitably made me very upset and tearful. This was the moment I decided that any contact was too much, I needed time and space to grieve and get over the loss of our relationship and I couldn't do that whilst he was sending me messages like that. I dropped his final few belongings at his parents house, removed him from my Facebook friends and deleted his number. It feels as though a massive weight has been lifted off my shoulders. I have ended that chapter of my life and am now ready to start the next one.

Have you any advice or experience of taking meds for Fibromyalgia?

Take care for now,

Marie x

Saturday, 29 September 2012

Onwards and upwards

My two key words since recovering (see last post) have been positive and productive. I have eliminated what I considered to be problems in my life and have strove to be more pro active. I have done this in just three easy steps, as the advert would say ;-)


My first step was to get my medication back on track, I am not always the best at remembering to take them. Having done this, I have for the first time in years woke up naturally at an early-ish hour feeling alive and happy to be so. I have found that along with eating three proper meals a day and resisting napping as much as possible this has enabled me to live a more normal life. I still struggle slightly in the evenings as for many fibro suffers this is the time when we need someone there just to help a little bit. This could be practical help such as making dinner or it could simply be that we just need a cuddle and a blanket.

My second step was to stop burying my head in the sand when it comes to my finances. Now anyone on benefits knows how much of a struggle it can be just to pay the basic household bills and to budget successfully. It can be a common misconception that we simply don't know how to budget when in actual fact the problem is that there is not enough funds to do this. Since not working I have been unable to manage on the benefits that in total are less than half of my previous working wage. Having paid off two of my major credit cards and making cut backs where possible it seems I will now scrape through each month. This is a big weight off my shoulders.

My third step was to get my flat back to feeling like my home. I started by having a really thorough tidy up of everything from Cd's to beauty products, some of which had gathered an amazing amount of dust! I then tackled what was commonly known as my Narnia cupboard, if opened you were at severe risk of something landing on your head! It is now a fully functioning accessible storage cupboard, oh how proud I am of my beautifully organised cupboard! After a couple of bags taken down to the household waste site, a trip to a few local charity shops and just a small box of items to be put on e-bay my home is clutter free. With a lovely new air freshener and a no smoking policy implemented my home now smells lovely too :-)

Part of my plan to be more pro active sees me going to meet with some of the tutors at a local college to discuss courses. This idea was introduced to me by my wonderfully helpful personal adviser at the Jobcentre. The courses are funded by the colleges and are therefore free as I am claiming ESA. I understand there are some eligibility guidelines but if you're interested then talk to your local Jobcentre. I feel this will be a really positive experience as it will allow me to meet new people with similar interests, get me out of the house and allow me to use my brain again. Fibromyalgia can cause isolation from the outside world especially if you're unable to work and spend most of your time at home. My friends, family and of course lovely Twitter family keep me going day to day but I can't help but feel there should be more to my life. I miss working terribly and hope that one day in the not too distant future I will be back in the world of work.

I plan to take each day as it comes with a positive mental attitude!




What do you find helps you stay positive?

Take care for now

Marie x

Wednesday, 19 September 2012

Suicide

The action of killing oneself intentionally.

Now as many of you know I have been finding life rather difficult, especially over the last month or so. I have disappeared off the radar somewhat these last few days. What with money worries mounting up, fibro flaring up and my two closest relationships busting up, life simply became unbearable. As I sat and calmly popped the amitriptyline tablets out of their foil packets I longed to fall asleep, fall away from all my troubles. 

I called William to tell him I loved him and that I was going to sleep now. I felt I had to say goodbye to him. 
After swallowing the pills down with a glass of water I had a very strange content feeling wash over me. I thought I done it, this was it now, I wouldn't have to suffer another day.

Reading this back it all seems so selfish. Suicide is often described as a selfish act due to the pain it causes loved ones. However those of you who have suffered suicidal thoughts will know it is far from it. I can only speak of my own experiences and say that at the time of taking the overdoses I truly believed it was the best course of action for not only myself but for those around me. I would no longer cause any stress and worry to my family and friends. I would no longer be a financial burden upon them. I would no longer cause trouble amongst them.

I awoke some 26 hours later to missed calls, voicemails, texts, emails, tweets... I was somewhat baffled. It would appear that I had put myself into a coma during this time. I had altogether no recollection of anything, I even tried to argue with William that I had spoke to him only 2 hours ago! As I slowly pieced together what had happened I couldn't decide if I was disappointed or relieved to be awake.

I am still in a dark place and unsure of my purpose in life. Having suffered for depression for many years this feeling is far from alien to me. To those who have never felt so desperately unhappy I guess it is all very difficult to comprehend. Some people struggle to empathise with my actions and are angry with me, say I'm stupid or just try to carry on as normal pretending nothing has happened. Everyone deals with the aftermath of attempted suicide differently. Personally I have spent lots of time away from my flat, escaping my troubles until I feel strong enough to face them again.

Mental health is far more common than most people realise... 


  • A colossal 450 million people worldwide are estimated to have a mental health problem.
  • It is estimated than 1 million people worldwide will die each year from suicide. 
  • In 2010 more than 5,700 of those deaths took place in the UK. 
  • Suicide remains the most common cause of death in men under the age of 35. 



With these statistics in mind why is mental health still such a taboo subject? 






Take care for now

Marie x

Thursday, 30 August 2012

A change in medication!

As any sufferer of chronic pain will know having the right medication can make a world of difference. At times we can feel like guinea pigs being told to try one pill after another. Each time we are hoping that this one will work and improve our standard of living.

Following my appointment at Guys I have stopped taking both Fluoxetine and Amitriptyline in preparation to start taking Duloxetine and possibly Pregabalin. Now I have been taking the first two for some time and in my opinion should have been weaned off. However my GP had different ideas... "It will be a much quicker process if you just stop taking them". And so this is now day 11 of not having taken anything other than Codeine throughout the day.

There was a slight problem with the letter from Guys to myself and the GP detailing the change in meds in the sense that it was not clear with the dosage of Pregabalin. Now instead of my GP calling, emailing or writing to the hospital in time for my appointment with him, he requests that I should call Guys and find out the information! What a waste of an appointment as when I called you just get a pre-recorded message and they endeavour to call you back within three working days. Now to my mind this is also very unprofessional, how can the GP prescribe me a drug with no written confirmation of dose? 



Week one was definitely harder, I was extremely irritable, emotional and not to mention exhausted. I could not get to sleep at night which in turn meant I was not getting enough sleep. This made me a very difficult person to be around. Although I am still very tired and somewhat tearful the other side affects seem to have died down. On Monday I shall start the Duloxetine and begin the cycle of a whole new set of side affects, oh joy!

Have you tried and tested lots of different medication? Have you found something that really works for you?

Take care for now

Marie x

Tuesday, 28 August 2012

William

I do not know where to start in writing this post...

It has been such an emotional rollercoaster these last few weeks. I have spent the most part in bed, wishing the days away. My life has been turned upside down. 

I really believed William and I had got it right this time, that we were going to live happy-ever-after. I had never been so happy, so in love, so determined to work through whatever was thrown our way. Then a secret was discovered and it changed everything. I had gone from looking at this man and seeing someone I adored to seeing someone who I felt I no longer knew. I made the decision to leave. This was far from easy. He was meant to be my husband. He was my best friend, my soul mate. We had planned our childrens names, what kind of house we wanted to buy... Three and a half years of love, laughter and adventures all ended. All my dreams and hopes for the future gone.

Knowing that I have made the right decision in the long run is all that is keeping me going. There hasn't been a day that has passed when I haven't thought of William and felt sad. I miss him terribly and I don't expect that feeling to go away any time soon. I can't even begin to imagine what my future now holds, its too scary without him. My whole world has collapsed around me.

I am truly devastated, I feel lost, empty and hopeless.

As the tears roll down my cheeks I can no longer even muster up a single thought...

Take care for now

Marie x

Monday, 20 August 2012

Grant me...

the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

Some things in life we are able to work at in order to achieve what we desire. Others we must simply accept the way they are. This however is often much easier said than done. I have found that with most of my key relationships I have sometimes lacked the wisdom to recognise what I can and cannot change and struggled to accept this.

The mental battle I have endured since early childhood with regard to my relationship with my mother is arguably the hardest. Although I am sure she loves me in her own way she has never been the mum that I so badly wanted and needed. Many psychologists later I have learnt that I must accept she is the way she is and I cannot change her. Knowing this certainly doesn't make dealing with the feelings of being unloved, unwanted and misunderstood any easier. 

Then there are the physical things I cannot change, my height, my nose, my long-term illness - Fibromyalgia. Not I, the doctor nor the professor can take away the pain and all that comes with it. Accepting that you have a long term health condition, whatever it may be, is the most important step to managing your day to day life. You must learn your limits whether that be how far you walk, what foods you eat or what time you take your medication. This is not easy, you feel as though your life has become a shadow of its former self. I felt I had been given a life sentence. After lots of crying and asking "Why me?" I knew there was only one thing I could do, accept it. No amount of crying, anger or denial was going to change it. I have Fibromyalgia, yes it is a part of my life but I will not allow myself to be consumed by it.

Then there is the issue with William, how much of this I care to divulge with my lovely readers I am not sure yet. It is still rather raw and I am still trying to make some sense of it in my own mind. However I'm a strong believer in Karma and that good always prevails evil.

Being able to accept situations and move forward is a key skill in life.

What have you had to accept that you cannot change? Or are you struggling to do this?

Take care for now

Marie x

Sunday, 19 August 2012

Apologies

Just a quick post to say how sorry I am that is has been so long since I last wrote. I have had a rather eventful few weeks to say the least! On a positive I've been on my holidays with the Bestie and then with the grandparents. On a negative although it is also a positive, I have split with William the boyfriend (more on that to follow).

Also I have a very small claim to fame...I was featured in the Panorama film "Disabled or Faking It?" regarding ESA and ATOS work capability assessment.

I shall be writing a proper post tonight or tomorrow, I promise :-)

Take care for now

Marie x


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

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.

However...

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



Wednesday, 27 June 2012

I honestly don't know where to start....

So it's been nearly two weeks since I last posted, apologies for that! 


I'll start with an update from the last post...I received a letter from the Enhanced Primary Mental Health Team stating that I was being discharged from them whilst awaiting my Single Point of Access referral. To be honest I don't actually know what that means but I guess we will soon see!


With my Work Capability Assessment fast approaching (4th July 2012) I decided it was probably time to actually do some research! I started by visiting the ATOS official website and after reading through the FAQ I had very mixed feelings. I felt calmer in the sense that I was now better informed on exactly who ATOS are but my reservations about how Fibro will be assessed and considered by them was still playing heavily on my mind. How can someone assess whether I am fit to work or not in a 20-60 minute appointment??? With a condition that is so unpredictable how can you possibly predict a pattern in how it affects an individual? This just seems like absolute insanity to me.


So now to explain where I've been lately...After the boyfriend (William) lost his job last Tuesday we took a rather spontaneous trip to Stonehenge on the Wednesday for the Summer Solstice. We packed a small bag and a cool box, jumped in the car with a duvet and pillow and set our sights on a night of celebration. We met some truly amazing people and were quite overwhelmed with just how spiritual it all felt. Unfortunately the very typical British weather let us down and we were wet through by about 2:30am, what do you think of my makeshift poncho? LOL






Needless to say we did also meet some rather odd people...


video




After the party finished at midday Thursday we headed off to Cheddar Gorge where we had a snooze in the back of my very small Peugeot 206...not the most comfortable sleep as I'm sure you can imagine. We then set about visiting various local points of interest before heading home late Friday night. 


My poor body really did not appreciate the lack of quality sleep, painkillers (which I didn't take enough of as I wasn't planning on staying away!) and of course warmth. I consequently spent the next few days in bed oblivious of time or day. I seem to have developed a strange rash on the soles of both my feet which apart from being extremely irritating I'm sure is completely harmless!


One must always take into consideration if pushing ourselves well out beyond our limit will be worth it...I'd say it was a very close call but the Solstice was definitely an event everyone should experience.


Have you been through the ATOS assessment, if so how did you find it? Or are you awaiting yours like I am?


Take care for now


Marie x

Thursday, 14 June 2012

What a week!

I'd like to start by saying sorry it's been so long since I last posted but I'm sure you'll understand once you read what's been going on!


So Saturday brought an end to playing mummy as all my hard work and effort was thrown back in my face by dear Sophie in a bid to get her own way. I think Jerry Springer would have had his work cut out let alone Jeremy Kyle! Sophie decided she no longer wanted to reside with me and went to our aunt's instead. I feel I have failed somewhat in my attempt to help put her back on track but as the old saying goes you can lead a horse to water but you cannot make it drink


In town there was an event with live music until 10pm, so me and the Bestie decided we would scope it out and have a few drinks. We met with a few friends and family and all in all it was a brilliant night with lots of laughter and dancing (we even danced the macarena)!!! Unfortunately by the end of the night the joys of Fibro decided to rear it's ugly and very unwelcome head in the way of complete loss of bladder control. I was luckily outside having a cigarette at the time so the Bestie and I made for a quick walk home avoiding the embarrassment of anybody noticing. Now as some of you may know and even have experience of, incontinence can be a less desired symptom of Fibromyalgia. It is not really clear why, but then none of the symptoms of Fibro are really understood by even the highest professors.


I spent the next few days in bed due to a cold/cough that just won't seem to shift, Fibro pain, fatigue and depression. 


Then on Tuesday something very odd happened. I felt completely numb and at peace, I felt ready to leave this life. I did not feel sad, angry, depressed. I simply didn't feel anything. I even tried to make myself angry by thinking of things, but no thought lasted more than a minute or two. I drifted in and out of sleep staring at the ceiling, everything seemed silent and peaceful. I had never felt this emotion or lack of emotion as the case may be and it frightened me. I called the doctor and made an appointment for the very next day.


I confided in fellow Fibro sufferer met through Twitter, who has become a dear friend about the feelings I'd been having. She listened to my rant most emphatically and followed with some great advice. I should research my nearest specialist Fibro clinic and request a referral from the doctor.


For most suffers of invisible chronic illnesses the doctors appointments we make can often feel like a waste of time but I can hand on heart say that my faith has been restored in the NHS. I went to my appointment rather cynical but determined to be honest, after all what did I stand to lose? I poured my heart out in what should have been a 10 minute routine appointment that actually lasted 45 minutes. I really felt he listened to me and did everything he could to help.


I left with a referral to the Fibro clinic at Guys Hospital, a referral to a specialist consultant within the mental health team and an appointment for Friday with a female doctor regarding a referral for investigation into the urinary incontinence. I must keep a bladder diary for the next 24 hours so as to have dates, times and volumes to present to the doctor. This will enable a better diagnosis. I finally feel that I have been taken seriously and have made massive steps in my road to a better state of mind and body.


I will keep you updated with the progress! 


Do you ever feel that your ailments are not dealt with seriously or effectively? Or are you simply too embarrassed to tell a doctor?




Take care for now


Marie x




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Thursday, 7 June 2012

Playing mummy!

I always dreamt of having the conventional 2:4 family, the loving husband that goes to work while I stay home with the children. Since my diagnosis with Fibromyalgia my views have somewhat changed, in the sense that I decided having children was no longer on my agenda. I felt that it was unfair to bring a child into the world if I am unable to look after him/her properly. Some days I am unable to look after myself so how could I possibly raise a child? 


Upon speaking to various friends via Twitter and the like, I have discovered that many Fibro suffers do have children and are perfectly wonderful parents. Perhaps I was just caught up in my own self pity? Perhaps I was being selfish? I'm sure that with the right daddy my child(ren) would be very happy.


It would appear that I have been given the chance to have a trial run and have recently found myself playing mummy to my 16 year old sister, Sophie! After being unhappy and moving from place to place for quite some time she has now settled here, well for the time being anyway. 


I'd like to think she is happy here or at least happier than she was. It is quite a strange transition from sister to mummy. I have had to set house rules, give Sophie chores, buy proper wholesome food and cook meals at normal times. I am still trying to find the balance of when to be fun sister and when to be responsible mother.


I may have had to sacrifice some things but I don't feel I've lost anything. I know one day soon she will leave and go back to living with mum and I will be heartbroken but I understand that nobody can replace her mother. Sophie and I will always have a special bond though and I will find comfort in that when she goes.


Taking care of Sophie has shown me that I can play mummy and I'm not all that bad at it! So if Mr. Right does ever make an appearance then perhaps children won't be ruled out. 


Take care for now


Marie x

Tuesday, 5 June 2012

What other people think...

Today has got me thinking about what other people think and how much it affects our behaviour. Now this could be people close to us such as friends and family or those we are meeting for the very first time. Life to me will always be about what other people think to an extent. 


My inspiration if you like, for this post was observing the Bestie and her family this evening at a Jubilee Tea Party that she organised. Her and her family are no different to any other family. She is a newly single mum with a gorgeous toddler, adapting to their new life. However, her mother in particular, likes to pick fault in almost everything she does from her bedtime routine with little man to how she washes her dishes and sets her table. Now the Bestie handled it in the best way she knew how, keep calm and carry on. This does not mean that she didn't care what they thought, simply that she has learnt to accept that is the way it is!


So lets think about meeting people for the first time...It is always stressed upon us as human beings to make a good first impression but surely it would be best to just be yourself. Yes you may say it's just about making more of an effort in terms of clothes, make-up etc but essentially if someone is to judge you on these things then are they really worth knowing? There is always this overwhelming expectation that we should always try to keep others happy, what about keeping ourselves happy first?


Then there's the whole how much do you share with someone new, do you go into your life history full guns blazing? For those of us who have battled depression it can often be a dilemma as we are worried what affect our past may have on our future. For us Fibro sufferers, do we tell them straight away? Do we go into detail? Do we try and play it down and act as if we're ok? Do we tell them of not only the physical but emotional and financial strains the illness has on our day to day life?


As for friends and family, yes they should love us just the way we are but still would you visit your grandparents or go to church in a short skirt or a low top? Would you swear in front of the elder members of the family? Would you smoke with children around? The answer to all of the above (I hope) being probably not. My point being that our behaviour is affected by even those nearest and dearest to us.


Every person we meet in life will form a perception based on what they can see or what they have heard (true or not) and I guess it comes down to how much do we care what that person thinks of us?


Take care for now


Marie x



Monday, 4 June 2012

Premature midlife crisis!

So today has been a difficult day, in fact it's been a difficult week! I really don't know where to start in telling you about it all! 

Lets start with today! I'm feeling rather down at the moment, this having no money situation really sucks. Anyone who thinks it's cushty living on disability benefits is very mistaken. Also I've suddenly realised that everyone around me is getting married and having children and that I am not. And yes, I know "no man is better than the wrong man" boy, did I learn that the hard way! I hope my prince charming isn't too far away?! I'm just having a bit of a self pity day I guess or at least that seems to be the general consensus. 

Now for the rest of the week...

Tuesday I am woken by the younger sister, Sophie, in tears that she's argued at home and has now missed her GCSE exam. So I rush round and take her to school and manage to get her in just in the nick of time. To cut a very long story short she has been living with me in my tiny 1 bed flat since! Now as lovely as she can be it has rather turned my world upside down.

Wednesday I went away for two nights to Bury St Edmunds with the nanny. It was lovely to be away and it's such a pretty place, as well as now having lots of gorgeous shops. We visited the village in which I met my first true love at the tender age of 16 (oh how grown up I felt at the time) It made me feel very nostalgic and brought up some very deeply buried emotions. I quite often have these good ideas and Thursday's good idea was to see the fore-mentioned ex and say goodbye. I felt I needed closure as I never had the chance all those years ago. It was very emotional but I feel like a weight has been lifted off my shoulders. I can now move on to the "right one rather than the next one" as the Bestie put it and stop settling for second best.

So needless to say I was well and truly ready to come home on the Friday after many tearful tweets, texts and calls. I had never been so glad to see the Bestie for our weekly wine, take-away, cake and #FridayTwiz.

The weekend was fairly uneventful, thank god!

Take care for now

Marie x

My very first blog post!

So here goes...


I should start by introducing myself *waves* I'm a 21 year old woman from a small town in Hertfordshire who suffers a long term invisible chronic muscle disease (try saying that once you've had a couple of glasses of wine) I am at the moment claiming Employment and Support Allowance, previously known as Incapacity Benefit. I have worked in many different companies carrying out various roles, my latest being a Highways Adviser for Hertfordshire County Council. It will come as no surprise to those of you who know/understand the condition that none of these jobs have lasted more than 6-9 months. 


I guess I hope to be a source of help and support for other suffers of Fibromyalgia and depression by sharing my views, experiences and concerns. Hopefully you will read and share yours too. I hope to highlight the struggles we face and celebrate the daily triumphs, no matter how small. 


My plan is to treat this blog almost as a diary and will try to write at least once a week. I cannot promise that I won't cause offence, I cannot promise that every post will have you in tears of laughter, I cannot promise that my posts will always make sense. What I can promise is that every post will be heartfelt and true. I will always be bluntly honest, sometimes too honest, about my feelings and findings in this crazy world we live in.


Take Care for now 


Marie x