just my little share but today am actually ok apart earache Drs at 4 today

[fairycazzie]

This was some thing i wrote a bit ago and i am on FB too i have my own little space but it is not very popular and no idea why ....is it because i talk too much hahah..i only really sing on a friday or perhaps saturday.

i did this because i am not one to take medication like many and only do it if my pain tolerance can not cope with daily work . i Some how not sure of those who do not take any meds how it is possible as i was told time and time again in Hospital with illnesses and things i have had that my pain levels are so amazingly high! but each of us are different and maybe we weaken over time.

Anyway i have disputes with certain ppl in my life i say white they say black and some how i argue with regards to meds and what can be managed.

i have tried cutting down and weaning off numerous times and having some thing i was born with too and the pain suffered through my life only taking pills now and again. Now having to live on them or unable to get up and about and do anything in the day.

So this was me one day and i wrote it .

Absolutely shattered.com no words to explain the exhaustion of a busy day !

But carry on regardless despite the problems because what else are we supposed to do.

The body is stiff the brain is fully fatigued beyond but fight fight as no flight in me The neck, shoulders, arms hands, legs base of spine and tops of legs .. we get told keep excercising well i never stop as not one to sit down as much as i do sit down a lot from no choice in the matter as i say i soon be on bubble wrap for a sore bum lol but on and on as tomoro is another day. I could rest more if things were running a lot smoother.

When you got a mortgage and cars and house to feed and pets to see to, cooking(which can be a challenge in many ways) for the kids when home, seeing to customers and making sure all good. it is extremely hard work beyond what anyone knows.

There is no cure there is only Management and the Management i have is nearing the maximum now and so to think whats next.

Each day i awake to alovely cup of Tea made by my hubby with 5 pills to take every morning just to get me out of bed and get going or i cannot start ! (think of a car thats run out of fuel)!! it wont work. Its ok some do not take medication but for me if i dont then i would be in bed most of the time with no energy and total weakness and no strength. the suffering would be worse,

But those magic little pills make my day and help to carry on and fight a day.

I dont do drugs and i dont drink much i dont go out , i dont socialise as i used to, becaue i feel i am such a burden now and that cannot do all the adventorous things one used to do. So i sit silently in doors and conversate to others who suffer like wise and try help them as having the experience now and only being diagnosed in 2012.

Its not life threating but its LIFE CHANGING!! its daily suffering and its unpredictable as a voodoo doll not knowing where the suffering will strike next and i put on a brave face to face the world and smile and wait to be asked by ppl who dont really know asking 'how are you '.. am fine i reply when deep inside its just not the real answer at all.

we cope but may not accept. Would you ever believe that going from being so so energetic dancing, splits going over back wards being extremely hypermobile with flexibility.

The muscles and ligaments are weak the nerves they are travelllng around the body doing the rounds picking on one part and then another. today i might walk tomoro i might not. So for me i make the very most of what i can do for the moment.

The ears are very sore and painful and inflamed and the head is more than a hangover thats nothing! the nausea you feel all day long trying to be controlled with pills so can eat a good meal. The swallowing issues and the choking on just a simple thing.

Guess what i look so normal too i do not look ill i do not look like anything is wrong, the only thing there is that i have put on weight for not being able to excercise and the fact no physiotherapist will touch me either, i been tossed off the wagon like a toy with a broken arm and no use.

Lets hope one day just one day a miracle will happen for those of us who have chronic prblems and can just for one day feel happy and normal again ...ohh hang on whats "normal" ?? normal is who i used to be despite all the Hospital admissions and the operations and the pregnancies that kept me being monitored throughout in hospital or going every day jsut to be scanned and checked.

now it all makes sense as if it was known as a child i may have lasted much longer and not have to suffer this way..but guess what i am STILL HAPPY in my own way and i have brilliant close ppl around me who care and help and constantly keep in touch!

Please keep in touch with some one who is a sufferer as they may just want a little communication and a little hug perhaps

Thank you if you have read this ..just a little taster of what today is like for me and what some days are. This is a mild day lets say

[hamble99b]

and a hug for you cazzie (( )) and a hope for a better day tomorrow.

regards,

sandra.

[irisjoy]

Hi Fairy cassie

i know what you mean about " feeling like a burden " i have always refered to myself as the runt of the litter and the expendable 1.

However if it was your Hubby ill you would look after him , support and love him just as he does for you

I don't like taking so many meds but they help us cope and why suffer even more than we have to ?

Normal hmm , i have never been normal just a unique enigma

So sorry that you are feeling so low and i am sending you warm hugs and positive thoughts

i will pm a really special lady that i consider a friend on here as you have asked

Tomorrow WILL be a better day , i have decided and " i won't be told "( a quote from my then 2 year old Grandgirl with Granny infront , hmm she WAS TOLD )

take care love xx

[Saskia]

Hi Fairycazzie,

Sending you love and hugs.

I am feeling low,too!

I broke my wrist 2 weeks ago and was told by the Consultant in the fracture clinic yesterday that it isn't healing as it should be. Deep joy! He said it is going to be a long haul. Fibromyalgia is a long bl***y haul in itself without anything else. I already suffer with fatigue but doing things one-handed is so exhausting. My husband is vey good but I don't like to put on him too much. I feel so frustrated.

When I fell it was on really soft sand. Thank the Lord it wasn't concrete!

I loved reading your blog, Fairycazzie. I know what it is like when you take the plunge and make the effort to blog and then very few people respond. It is a bit disheartening but then I suppose we are all struggling and those who do feel able to respond do. I do try to give some support on a daily basis. I haven't got the energy at the moment to write a blog myself. If I wasn't on anti-depressants I would probably burst into tears!

Still I shall keep smiling and pretending all is well even though I feel miserable inside!

At least we know on here that we are not alone.

Take care,

Love and lop-sided hugs

Saskia XX