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

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...


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