Friday, 26 October 2012

Pack up your troubles


So I have spent the last day and a half packing ready to go away tomorrow. I am mega excited now and I am worse than the children for not getting to sleep thing night before. I suddenly seem to remember all the things I haven't packed yet as soon as I start drifting off too.
With Fibro it seems to take me twice as long to pack everything. This is partly due to it hurting to pack but also due to the sheer amount of things you have to take with you medication wise. The children also need all their medications packing too. You need a whole large bag just to contain the medications in which is a bit of a nightmare.



So I am feeling super stressed. Still trying to get things in the cases and make sure I have got everything. That's a bit difficult when you have a mind like a sieve.
I also have to work out whether or not to take my crutches with me. I know I will need them but my mum doesn't want me to take them with me. I am not sure why she doesn't want me to take them maybe it's as I am expected to help carry cases as my dad is also disabled. If I go by how I was with a couple of days in Liverpool I will need the crutches.



I am not the best traveller in the world I tend not to be able to relax and get quite stressed over the small things another Fibro thing so I am told. The children are actually not too bad it just tends to be me as I am tired and don't get any rest on the train. It's also as the night before I can never take all of my medications as I will never be in a fit state to get up enough to be with it to travel the next day. Thank goodness this time we are going down on a mid morning train and not an early one.

I will now sign off for a week or so whilst I go and enjoy a well earned break with my family and I will blog again when I get back.


Thursday, 25 October 2012

The power of a blog.


The power of Blogs.

For a long time now I have been following a blog about a little girl who had been battling a form of cancer that was terminal. Her name was Stella and she was 3.5 years old. I don't want this to be sad post as it's not what her family would have wanted but more of a reflection post on my behalf. This one child has taught me more than I possibly thought I could learn especially through a blog.

Stella wasn't dying from Cancer but she was well and truly living with her Cancer. She showed that despite doctors saying she only had a few months to live she lived way over 18 months from diagnosis. She lived to see not one brother born into the world but 2!

She had a lust for life enjoying trips out and eating ice cream! She showed that despite what life throws at you life is there to be lived and grab it with both hands. When she lost the ability to use her arms that did not stop her enjoying things instead she learn't to paint using her mouth. When she lost her speech she learnt to communicate by sticking her tongue out.

Life is about learning to adapt to the situations that are thrown at us. Maybe we could all learn a few things from Stella.

'Don't postpone joy until you have learnt all of your lessons joy is your lesson.'

Alan Cohen.


In memory of Stella Joy  18th April 2009 - 22nd October 2012

'The light of a distant star continues to reach the Earth long after the star itself has gone.'

Taken from Stella Obituary.

Wednesday, 24 October 2012

Unexpected and prolonged trip.

Travelling with Fibro.

So I have just come back from an unexpected trip to Liverpool. The plan was a day trip but it turned into a long weekend. The journey began fine until we got to Birmingham where the train to Liverpool was cancelled. We then had to get another train to Wolverhampton and change there. What a nightmare when we arrived. Apparently copper thieves caused all the delays etc but the trains kept being cancelled diverted etc. Our train changed platform 5 times!!! By the time we finally got on the train I was feeling sick and shaking in pain. The train was crowded and packed that no one could sit let alone get through to the toilets get still the guard was telling people to move up. Poor Evie needed a wee 30 mins away from Liverpool too. By the time we got to Liverpool I was shattered and the thought of delays etc on the way back added with the football crowds was not doing the Fibro any good so I booked in to a lovely hotel. 

Dock view from outside our window.

After taking care of the business I had to see to, we went to our hotel. We had a lovely Dock view which the children loved. We then had to go and find somewhere for food and have a look round. The girls even got to stroke/hold an owl! Needless to say by the time I got back to the hotel I could barely walk and Fibro was in full force. As my mum put it I was hobbling like a 90 year old.



So during the night sods law I had to play nurse mummy yet again with the youngest with yet another tummy bug! I woke up the next morning in agony and could hardly move so we booked into another hotel for a second night.

Girls and Nanny
The Liver building

Evie loving the Liverpool wheel.


Although the extended stay was not planned we did have a lovely time and Liverpool is defiantly a city that I would visit again. I have to remember I cannot do things as before and there and back in a day is almost impossible. I am starting to see my limits. We did see some museums that we local to us which the girls enjoyed, went on the Liverpool eye and went round the docks. This has been a valuable lesson for me into realising my limits however frustrating this is!

Girls in their new outfits brought from shopping!


So after being nurse mummy to Evie, Monday night Lillie started with sickness. I am exhausted with it all! So far this bug has visited Evie 3 times and Lillie just the 2. To be honest this is all I needed with trying to get ready for our holiday this weekend.

Just call me nurse mummy!


So I have finally got round to doing a list of clothes for us to take on holiday, now I need to make sure I get everything washed and packed. Some of this got put on a back burner as I slept all day yesterday after being worn out! I managed to get the assisted passage booked to help us on the trains for our journey let's just hope they do their jobs now!


Lessons Learnt.
The trip to Liverpool has taught me:

That I cannot do what I could do before.
That the weather has a significant affect on my fibro and I can do more in the summer than in the colder damper weather due to pain levels.
That even though I thought I was doing better at pacing I have obviously got worse since then so need to re assess this and my capabilities.
The main thing is that no matter how much pain I was in etc I still had a really lovely time with the girls and had fun visiting somewhere I have never been before!

Just because your in pain doesn't mean you lose the ability to have fun!

Friday, 19 October 2012

The waiting game.

ADOS assessment.

So Evie did the 2nd module from what I could work out today, (For more info see previous blog). Well Evie behaved typically Evie for how she can be with people she doesn't know without me being able to interact with her. I will try to explain how it went.

We went in the room and Evie was supposed to sit at the table with the Speech and Language Therapist (SALT) however she was reluctant so stood by me. The SALT asked what Evie liked to play with at home and I explained she liked playing with fiddly things at home and leaves snail trails of stuff everywhere. I said she likes small world people and likes to put them in and out of cars and things. The SALT then tried to encourage her to the table she wouldn't so she got out the bubbles. Evie then had to ask for big bubbles for one bubble or small bubbles for lots of bubbles this was then repeated. After a while the balloon was brought out but the SALT stood up, Evie was asked if she wanted it big or small and it was let go. She was shown some baby type musical toys - Evie ignored the lady.

Evie was then encouraged to the table with me next to her then she was asked about her birthday which was only a couple of weeks ago. Evie wasn't very forth coming with what she said and kept having to be asked questions where as she would speak lots more if it was someone she knows asking. A puzzle was then brought out - Evie said she 'didn't want to' do it. The SALT ended up doing it.

A tea party with a doll was also tried to be modelled again Evie kept saying 'you do it' when asked to do something by the SALT. She said she 'didn't want to' a few times during this too. The one thing she did do spontaneously was count the candles '1,2,3,4'.

Next the SALT then directed Evies gaze to something away from her Evie looked and the other observer made the rabbit hop. After that she was asked if she wanted to look at a book the reply ' I don't want to' was heard yet again. Some smaller toys were brought out some small people sofa tv table etc and fire engine, cup and ball, dog, screw driver in a bag. Evie wasn't interested in any of these really. The SALT was modelling things whilst talking asking some questions Evie kept trying to put the sofa cushion straight. She didn't play with them. She interacted when the dog was knocking the ball but she was supposed to use a person to knock it back but wouldn't only she would. Again during this everything was 'you do it'.

She was then shown a picture of a pinic it was a cartoon type and very detailed. she wasn't interested. The lady asked what she could see, Evie didn't answer. The SALT pointed out a cat she asked what Evie saw and she pointed to a cat. The SALT then pointed to a house and asked what it was Evie said she didn't 'want to do this anymore'.

She was then asked about another book and you guessed it she 'didn't want to'. The SALT then tried to offer her a choice out of 2 books then answer was the same. SIGH!

All that was left was for a snack she was offered a drink or snack she said 'snack'. She then got to choose between banana and biscuits and of course who would turn down chocolate chip biscuits!!! They were the minis and 4 were put out and she was asked how many she would like she replied straight away '4'. The SALT then said would have to ask me I said that was fine and they were only small. Now I look back I am wondering if that was deliberate to get me to only say less to see if she would kick off? I don't know. After  they said she could go but she remained sat down looking at the drink. She was offered the water and stayed till she drank it all. I had to get her to say bye at the end.

On the way out I was asked if I expected her to be like that my answer.... quite frankly yes!


 The above picture just about sums Evie up entirely - her way or the highway as we say at home!          

Waiting game.

Now it's a waiting game. Waiting for Evie's next appointment which we will either get or not get an appointment. My biopsy results from my endoscopy. Waiting for my name to come up on the Fibro group list - have been told Jan. Waiting for confirmation of another group starting in my area for management of long term conditions. Waiting for my next Rheumy appointment. Waiting for my ultrasound scan on my pelvis. I am probably waiting on something else but I can't remember my mind seems to think there is something though. It's always all about the waiting - you start to learn a bit more patience, which is very hard when you are an inpatient person by nature!



It's 5.03 am in the morning here and I haven't fallen asleep yet probably as I haven't taken my night time amitriptiline as I have an early start tomorrow and have to be out the house at 6.45 am and anyone who takes ami would know that time is almost impossible on ami let alone if you didn't take it early enough. I have found it's best to take it 10-12 hours before you need to be awake. I went round to a lovely friends tonight just down the road and ended up getting chatting and time ran away and before we knew it - it was 10pm! OOOPPPS!


The house of lurgy.

Well as you gathered Evie is now better it was just that one awful night of it we had. Lillie wasn't at school today as she woke up feeling very poorly and run down and couldn't get herself moving. Lillie spent today resting watching tv and playing her ds.

It's hard having them both off school and nursery and especially at the same time as it just wears you out. With Fibro you need to rest and having them out at school and nursery means you get some much needed time to rest and try and get some sleep or just take things slowly. I really need no illness next week as the house looks like a bomb has gone off, the washing pile is sky high thanks to Evie's sick episodes creating extra washing and I need to pack for holiday!!


Thursday, 18 October 2012

Brought to you by the power of caffeine!

Long day.

After getting no sleep all last night due to poorly children and having a hospital appointment to go to today, today I was powered by caffeine. I love coke but too much makes my stomach play up but today I NEEDED it to make it through the day! I am just about still awake but have a killer headache from the exhaustion.


So after being sick 7 times in the night Evie woke up this morning feeling better and hungry. She managed to eat a bit today  and drink and has kept it down. She still is bit tired and looks pale but at least she is better - fingers crossed! So Evie is better and Lillie gets home from school feeling poorly with a slight temp and a headache. I have dosed her up with calpol and sent her to bed with fingers crossed she manages to fight the germs off.                                                                                        


So tomorrow afternoon Evie is supposed to be having her Autism Diagnostic Observation Schedule (ADOS). This will help to assess whether she has Autism/Aspergers.

                                                         Aspergers Cats Video

The ADOS consists of 4 modules requiring 35-40 minutes to administer. However they are only assessed on one module which is best matched to their language level and chronological age. Modules 1 and 2 require the test user and child to move around the room whereas 3 and 4 can be administered at a table. Activities for each module has the following activities:

MODULE 1: for children who do not consistently use phrase speech.
  • Free Play
  • Response to name
  • Response to joint attention
  • Bubble play
  • Anticipation of a routine with objects
  • Responsive social smile
  • Functional and symbolic imitation
  • Birthday party
  • Snack
MODULE 2: for those who use phrase speech but who are not verbally fluent.
  • Construction task
  • Make-believe play
  • Joint interactive play
  • Conversation
  • Response to joint attention
  • Demonstration task
  • Description of picture
  • Looking at a book
  • Free play
  • Response to name
  • Birthday party
  • Snack
  • Anticipation of a routine with objects
  • Bubble play
MODULE 3: for verbally fluent children
  • Construction task
  • Make-believe play
  • Joint interactive play
  • Demonstration task
  • Description of a picture
  • Telling a story from a book
  • Cartoons
  • Reporting a non-routine event/conversation
  • Emotions
  • Social difficulties/annoyance
  • Break
  • Friends/loneliness/marriage
  • Creating a story
MODULE 4: for fluent adults
  • Construction task
  • Telling a story from a book
  • Description of a picture
  • Demonstration task
  • Cartoons
  • Creating a story
  • Conversation
  • Current work/school
  • Social difficulties/annoyance
  • Break
  • Emotions
  • Daily living
  • Friends/marriage
  • Loneliness
  • Plans and dreams
Each module presents numerous opportunities for the individual being assessed to exhibit behaviours of interest in the diagnosis of ASDs through standard ‘presses’ for communication and social interaction.

Notes are taken during the administration of the module. Overall ratings are completed immediately after administration, even if the session is taped. These ratings can then be used to formulate a diagnosis through the use of a diagnostic algorithm which is provided for each module.


This will be an important day for Evie and a long time coming. Whatever will be will be with her I just want to get her the support she needs if she has it. Diagnosis date will be 5th Nov so I expect I will be nervously awaiting this for her.

I am feeling very sleepy and all is quiet so far from the girls so I am heading off to bed hoping to feel better tomorrow than I did today!

Wednesday, 17 October 2012

Just call me nurse mummy!

'Mummmmmyyyyy I don't feel well'.

Dealing with poorly children.

So it feels like both my girls have been constantly tag teaming me with their illnesses since the end of August. So much so that I have only had one full week with them both in school and nursery at the same time. It started with the chickenpox in one then the other then allergic reactions, sickness bugs - both girls, urine infections, throat infection, chest infection. Then tonight so far youngest has been sick 7 times arrghhhh! The eldest went to bed not right and looking very pale and tired too. I hope they're not going to do a tag team again.

Having sick kids and chronic illness yourself is this gives you no time to rest yourself. School/ nursery time is when I rest and try and get things done but this doesn't happen when they are poorly. It always seems to coincide with when you have lots on or to do. For example I am back at the hospital again tomorrow and Evie is due to go on Friday for her ADOS (Autism) assessment . Bad timing! Nothing for it but to stick on your nurses hat and become nurse mummy for as long as the illness takes.

There's a reason why pencils have rubbers on the end! With Fibro it's always good to write in pencil.


It's important to remember with chronic illness is that you can plan but sometimes you have to revert to plan  B or even C and sometimes you plans have to be cancelled all together. I try and be flexible with my plans and be realistic!

It's that time of year when people start to mention that C word. Yes I am talking about Christmas. Learning to pace is also about learning to plan ahead. So my planning has begun. I want to be organised and not have everything left to the last minute as there always seems so much to do and organise for Christmas. I love Christmas it's my favourite time of year it means I can enjoy the magic of it with the girls.

I start buying presents throughout the year when I see a good bargain I can't resist. I do the same for birthdays. I have got some lovely trips out with the girls planned for over the festive period as part of their presents. These are mainly the theatre as it's something do able for all of us and we all love the theatre!

I actually look forward to the planning of Christmas and looking out for various activities for the children to go to. I am a big kid really and still love going on the sleigh ride at the local co-op shop. It's been around for years since I was a kid and brings back some lovely memories - I remember really thinking we moved!

The cloak of invisibility.

Having a chronic hidden illness often means that people think you are taking the p*ss. The British Government has got people into the mentality of thinking that we are all work shy scroungers that live up the high life. This has in turn led to the public seeming to think they can question and basically hound those that are disabled. Just because people don't 'look disabled' doesn't mean they are not. It seems as if you are young especially you become 'fair game'.



So tonight I was posting on one of my groups and we were talking about Adenomyosis and Endometriosis, Someone wanted to know what these were and what the difference is between the two. I thought that seeing as that question came up on there it may come up on here so I will answer it especially as I am having some more investigative work done in this area. Unfortunately you've probably guessed by now that it is another thing linked to Fibro, it seems a lot of things are! 


This is a long term chronic condition in which small pieces of the womb lining are found outside the womb. This could be in the fallopian tubes, ovaries, bladder, bowel, vagina or rectum. The symptoms of the condition vary from person to person

Symptoms include:
  • painful or heavy periods
  • pain in the abdomen, pelvis or lower back
  • pain during sex
  • bleeding between periods
  • fertility problems
  • pain when urinating
  • bleeding from the back passage
  • bowel blockage (if the endometriosis is in the intestines)
  • coughing blood (if it's in the lung)

    The pain severity is not based on how much you have but on where in the body you have it.


This is uterine thickening that occurs when endometrial tissue that normally lines the uterus moves into the outer muscular walls of the uterus.

The symptoms include:
  • Heavy or prolonged periods
  • severe cramping or sharp knife like pain during periods
  • Period pains that last throught your period and get worse as you get older
  • pain during sex
  • bleeding during periods
  • Passing clots during your period
  • Uterus may double or triple in size - you may not notice this but your lower adomen may get bigger or feel tender.

What's the difference?         

Endo is basically outside the uterus and Adeno is in the uterus.


'Everyone wants happiness no one wants pain but you can't have a rainbow without a little rain.'

Thinking on the positive.           

I think when you have chronic conditions it is important to look at the positives in your life. It's these things that you need to draw on when things get a little tough. It can be far too easy to get into negative thinking patterns. I always try to look to the positives when I can and I think this is extremely important when you are a parent.

I would say the biggest positive and inspiration in my life is my family. The girls never fail to make me smile whether it's things they say, do, or achieve. Take tonight for instance Lillie gave me a little note. It read:

To mummy I love you very much you are the best mummy.
Love Lillie and Evie xxx

It's the little things that make it all worth while seeing the smile on your children's faces give you the strength to keep going and keep fighting illness.

I am thankful for what I have, yes I may have this illness but I still have the ability to smile and I can learn to adapt to what life may throw at me!


Tuesday, 16 October 2012


Dear miserable human being,

Hi my name is Fibromyalgia I am an invisible chronic illness. I am now 'velcroed' to you life. Others around you can't hear me or see me but YOUR body can feel me. I can attack you anywhere or anyway I please. I can cause severe pain or if I am in a good mood I can make you ache all over.

Remember when you and energy ran round together and had fun? I took energy from you and gave you exhaustion. Just try to have fun now! I also took good sleep away from you and gave you brain fog aka Fibro fog. I can make you tremble internally or make you feel hot or cold when everyone else feels normal.  Oh yeah, I can make you feel anxious or depressed too. If you have something planned or are looking forward to a great day I can take that away too. You didn't choose me I chose you! I chose you for various reasons: that virus you never quite recovered from, or that car accident, or childbirth, or the death of a loved one, or maybe it was the years of abuse or trauma? Well anyway I am here to stay!

I hear you're going to see a doctor who can get rid of me? I'm ROFL (rolling on the floor laughing)! Just try, you will have to go to many, many doctors till you find one who can help you effectively. In fact you will see many who tell you' it's all in your head' or some other version of that. If you do find a doctor willing to treat this non disease then you will be put on many many pills.You will be told you are suffering from anxiety or depression, told to sleep or exercise properly. You'll be told to think positively, poked, prodded and most of all not taken seriously not taken seriously when you cry to the doctor about how debilitating your life is every single day!

Your family, friends and co workers will listen to you until they get tired of hearing how I make you feel. Some will say 'You're just having a bad day' or ' Remember, you can't expect to do the things you used to do 20 years ago' NOT hearing the fact that you said 20 DAYS ago. Some will start talking behind your back, while you slowly feel you're losing your dignity, trying to make the understand, especially when your in the middle with a 'normal' person and you can't remember what you we're going to say next!

In closing you've probably realised the ONLY real place you will get any support or understanding in dealing with me is other people with Fibromyalgia. They are the only ones who will understand your complaints of unrelenting pain, insomnia, fibro fog and the inability to perform everyday tasks 'normal' people take for granted.

Remember I am stuck to you like velcro and I expect to be together for the rest of your life!

Have a nice day ROFL


Firstly I would like to say if there is anything you read on here and you want me to clarify etc please leave me a comment/ question and I will try to answer you as best I can in a following blog. Tonight's answer is in response to asking what hyper mobility is. When I have tried to explain it before I have explained it as being double jointed. Being hyper mobile is being double jointed but having hyper mobility syndrome as I do entails more than just being extra bendy and supple.



Hypermobility symptoms:

  • Joint pains, particularly after physical work or exercise - due to over stretching of the joint capsule (the structure that holds the joint) and ligament
  •  muscle aches and pains as your muscles have to work harder with supple joints
  • back pain and neck pain
  • tendency to bruise easily
  • pain that gets worse through the day and better at night after you have rested
  • fatigue
  • night pains (in children)

Digestive system symptoms:
  • stomach acid leaking from your stomach to your gullet
  • stomach having difficulty emptying it's contents into the small bowel, which can cause bloating and nausea
  • overgrowth of bacteria in your bowels - this may cause diarrhoea bloating and cramps
  • constipation
  • Irritable bowel syndrome

Further Symptoms:
  • stress incontinence
  • hernias
  • varicose veins
  • flat feet
  • droopy eyelids
  • thin or stretchy skin
  • blueish tinge to the white part of the eyes
  • anxiety
Can also cause Postural Orthostatoc tachycardia syndrome (POTS)

Joint Hypermobility syndrome can cause abnormalities in part of your nervous system that controls the bodily functions. The autonomic nervous system.
These abnormalities can cause problems when you stand up or sit in the same position for a while. you blood pressure can drop to low levels. In some People this can lead to POTS. POTS causes your pulse rate to increase rapidly within 10 mins of standing up.
You may also experience:

  • dizziness or fainting
  • headaches
  • tummy upsets
  • sweating
  • sensation of anxiety
  • purple puffy fingers and feet
  • heart palpitations.

I personally don't have all of these symptoms but with having Fibro it's hard to tell which is which as some stuff overlaps. I know both my children are super bendy I just hope it doesn't turn into the bad sort for them.

Thoughts for today....                 
I am currently wondering how long this flare will last if it is a flare that is. I am exhausted. My thyroid results have come back normal so it can't be that that is making me feel extra rubbish. My iron levels are down and I am due my B12 jab next week but still not low enough for me to be feeling this rubbish. I can't possibly blame over doing it as not done that much to over do it with. It's so frustrating. All I can blame is the Fibro.

I miss the sun and the warmer weather winter is a depressing time of year. It's cold and horrible and I hate the rain.  


Tonight I have been watching the girls dance round the room whilst singing to One Direction and holiday party dances. They really make me laugh. I am always chief DJ. I wish I could get up and dance with them but a short burst of waving my arms and I was done in. Didn't stop me having fun and singing along though!


The children really keep me going so sitting and spending time with them always cheers me up on a down day. After their mad dancing we did some drawing and Lillie wrote a letter to her favourite funstar on holiday  to let her know we were coming back in just under 2 weeks. Evie drew her a picture.  By the way I still haven't written my packing list yet!

A note to finish.

A letter to 'Normals'

There are things I would like you to understand before you judge me...

Please know that being sick doesn't mean I am not human. I may spend most of the day flat on my back and I might not seem great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.

Please understand the difference between ''happy'' and ''healthy''. When you've got the flu you probably feel miserable but it will pass. I've been sick for so long that I can't afford to be miserable all the time, in fact I work hard not to be miserable. So if I sound happy, it means I'm happy, it does not mean I am well. I may be in pain and sicker than ever.

Please don't say 'you're sounding better!'

I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't mean I can stand for ten minutes or an hour. It's likely that five minutes has exhausted my resources and I need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases your either paralysed or can't move with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting 'sitting up' 'walking' 'thinking' 'being sociable' and so on... it applies to everything. That's what fatigue based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) to one day walk to the park and back and the next day i'll struggle to reach the kitchen.

Please don't attack me when I am ill by saying 'but you did it before!'

If you want me to do something, ask me if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens don't take it personally.

Please understand that 'getting out and doing things' does not make me feel better, and can often make things worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer to participate in life?) but it is not caused by depression. Telling me that I need to exercise is not appreciated or correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I have to do it right now - it can't be put off or forgotten just because I am doing something. Fibromyalgia does not forgive.

Please understand that I cannot spend all my energy trying to get well. With short term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realisation that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It does not mean I have given up. It's just how life is when your dealing with a chronic illness.

If you want to suggest a cure, please don't. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realised but quickly realised I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know it by now.

If you read this and still want to suggest a cure, suggest it in writing but don't expect me to rush out and try it.  If it's something new with merit, I'll discuss this with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and can take a long time to sort them all out.

I depend on you - people who are not sick for many things but most importantly, I need you to understand me.

Letter copied from the Fibromyalgia community.        

Sunday, 14 October 2012

Go and put the monkey on the fridge!


So again I have been sleeping most of today but trying to sleep with fibro is like trying to sleep on a bed of nails. I am exhausted and wiped out even though I slept part of last night and most of today. I also need a new mattress desperately but all the decent memory foam ones cost a fortune that I don't have. I could buy a cheap on but there isn't really much point as I need a memory foam one in the long run to help with my fibro.                                                                    



According to the British government and ATOS most of us with chronic medical conditions and disabilities are fit for work despite some days hardly being able to make it to the toilet how is that on? I think a lot of people assume that we are well off and can afford things which is just not true. We struggle. For example, Aldi are doing a heated blanket thing at the moment and a lovely lady posted a link on our Fibromites group. We all would really love one but the common theme was that none of us could afford the £30 that it would be to get one! 

I think a lot of us worry and struggle with money and many currently have appeals going through to get extra money to help from the government. I will complete mine when I have been to my next consultant appointment next month.

The money that I do have I like to spend on my girls. I like them to do their activities and have fun. It's a way of me being able to do things with them in a way as I can watch them. Just because of my illness they shouldn't miss out!

Looking forward.

I am now looking forward to going away for a week in half term which is just under 2 weeks away. I love getting away to our favourite holiday park in Weymouth. I can't wait for a change of scene. Getting ready to go on holiday is exhausting enough for anyone but I hate it. I can either try and pack in stages and spread it out or do what I normally do and do it all in one go and wipe myself out. This time I need to try and pack in stages. Firstly, I need to do a list secondly I need to remember where I have put it!

Fibro Fog.
So I have been having bad Fibro fog this evening. It's hard to focus on things and it take ages to complete anything. For instance it is taking me forever to get this blog done.

One example of Fibro fog is when you say stupid things. This can be embarrassing in front of people who don't know you or people who don't understand about the fog. This is one of the reasons I want to cover this area in my blog as I am very embarrassed when I am like this and just want to hide away. My children get used to the silly things I say and we laugh about it. typical example of something I have said is ' Go and put the monkey on the fridge'. This would translate as go and put the money on the fireplace! You can see why I can get embarrassed by this!
It can also be very frustrating when you want/ need to do something and you forget, have difficulty concentrating and following conversations. I can begin a sentence and forget what I am saying halfway through. People can also talk to me and I struggle to concentrate on what they are saying and appear like I am not listening. I know that my own mum gets very frustrated by me so I am embarrassed by what others will think. The fog seems to be getting worse and worse lately please be patient with me.

                           I've got Fibro Fog what's your excuse?


Symptoms of Fibro Fog.

For people with Fibro this is one of the most difficult symptoms for us to deal with and also explain. It is a tenuous  cognitive impairment that is NOT psychological in nature. It is also NOT psychosomatic. Fibro fog is real and it is very annoying.

The symptoms are: 
  • Short term memory loss
  • Difficulty remembering where you put things
  • Difficulty remembering plans
  • Difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
  • Difficulty finding the 'right' word in conversation                    
  • Difficulty remembering simple numbers                                 
  • Difficulty transposing letters and numbers
  • Trouble concentrating and focussing                   
  • Mental confusion and fatigue
  • Loss of short term memory

So when I have forgotten to meet up with you or forgotten times, details etc I really have. I forget a lot of things hence I have to write everything down. The only trouble is then I often forget to look! I am not standing people up I have forgotten the doctors, dentists, hospital appointments etc too! Best thing to do is remind me - I wont take offence I will be glad you have reminded me!

Those that should know.

Having Fibro means you enter a kind of postcode lottery when it comes to your fibro care. It often takes
years to even get a diagnosis and then even when you do some gps know nothing about it or even believe in it. The trouble is, is it's one of those illnesses that have little research done into it and where the research is is mainly in America. 

I can count myself lucky in that I have a fab gp surgery but I know that many people wish they had. The above cartoon is a joke but it does actually happen! I am currently under a few different department at the hospital for various things and experience have been very varied. I had a massive battle with the hospital to get the diagnosis in the first place but now I have it doors seem to be opening up. Although how long for I don't know. Getting a diagnosis is a relief in one way as you know it's not in your head.

This week I am back at the occupational therapy department. It is exhausting going up to the hospital one 2 buses each way for appointments and it wipes you out. I also have tests to chases up at the drs and need to get my B12 injections re done. I can see this week will wipe me out. With Fibro you have to pace yourself but it's easier said than done when you have all these appointments and other things you need to do as well as being a  parent, run a house etc. Pacing is easier said than done!