Thought I'd wrtie abit about myself in hope of putting you are ease if you'd like to contact me or indeed come along to our support group.
For the first 10 years of my life I had intensive physio to begin with due to being diagnosed with Hyper Joint Mobility. In my teens I still had to have physio on and off for various reason. I would bruise and hurt myself easily. It was believed I had Glandular Fever at one stage.
In my 20's I gave birth to my first daughter, and I noticed I was suffering random pains, again having on/off physio, but towards my late 20's, I gave birth to my 2nd and last daughter in 2000, my health started to go downwards then and in 2002 I was diagnosed with Fibromyalgia.
The Rheumatologist said you have fibromyalgia, get some sleep and you'll be fine - oh, on the way out, the nurse will give you a leaflet. That was that, it was good to have a name to my random pains, didn't mean though that I fully understood it!
For the next 7 years, I plodded along, was told I never work again - that I found very hard to take in, but I had children to concentrate on. In this time I had split up from the girls father, and met a lovely man, whom I married in 2009. BUT that wasn't without it's problems.
Think it was around April/May of 2009 we decided to get married - in August of that year! my mobility was detiorating, and I wanted to walk down the aisle, hence a quick wedding (you know what I mean!) diseaster struck the last week of July, I was admitted to hospital with severe head pain, it was sure if I had burst a blood vessel had a tumor or what. Had a CT Scan, fine, had a lumbar puncture - bang, massive headache on top of what I already I had. I couldn't move without needing a bucket. This went on for a few days, I dehydrated pretty bad too. The wedding was looking very dodgy at this stage, towards the end of the week I was rushed to have an MRI, wasn't showing any improvement, but I knew in my heart, I was worse due to the lumbar puncture, but they wouldn't have it. I wanted to go home and recooperate, naturally, I couldnt sit up so couldnt go. Anyway, within 12 hours I had the all clear from the MRI. Right, thats that, I'm discharging myself. I spent the whole night, pressing the button on my bed to raise me up, i was determined to get home. Late the following afternoon, I was going home, so put of a fake persona, when no nurses around I had to put my head down! I laid down for the 50mins journey home, straight to bed, bucket in hand!!
Two weeks into August, still no better. A doctor told me I'd have to have my spine plugged (filling the small hole made by the lumber puncture with blood) couldn't guarentee I'd be well enough for my wedding on the 22nd. Or, I could try drinking Isotonic drinks and eat ready salted crisps - believe me, eating anything was the last thing on my mind. Anyway, worth a try. Wow, what a change within a week, I was on the mend, I could actually get out and about without the bucket!!!
Had a fantastic wedding day and was on a high for weeks.
Then I started to detiorate yet again, I was exhausted at whatever I did, November 2009 I was diagnosed with ME. Was gutted, newly married, new life.
I coped for a year, but now, I mainly stuck to my bed, if not in bed, in the house. I rarely go out.
But I have to carrying on my support group, no matter how tired I am afterwards, it cheers me up no end to meeting new people and seeing friends.
Its learning to pace. To rest before and after any event is very important.
sorry for carrying on, but once I got going, wow, never wrote this much in any essay at school!!!!
For the first 10 years of my life I had intensive physio to begin with due to being diagnosed with Hyper Joint Mobility. In my teens I still had to have physio on and off for various reason. I would bruise and hurt myself easily. It was believed I had Glandular Fever at one stage.
In my 20's I gave birth to my first daughter, and I noticed I was suffering random pains, again having on/off physio, but towards my late 20's, I gave birth to my 2nd and last daughter in 2000, my health started to go downwards then and in 2002 I was diagnosed with Fibromyalgia.
The Rheumatologist said you have fibromyalgia, get some sleep and you'll be fine - oh, on the way out, the nurse will give you a leaflet. That was that, it was good to have a name to my random pains, didn't mean though that I fully understood it!
For the next 7 years, I plodded along, was told I never work again - that I found very hard to take in, but I had children to concentrate on. In this time I had split up from the girls father, and met a lovely man, whom I married in 2009. BUT that wasn't without it's problems.
Think it was around April/May of 2009 we decided to get married - in August of that year! my mobility was detiorating, and I wanted to walk down the aisle, hence a quick wedding (you know what I mean!) diseaster struck the last week of July, I was admitted to hospital with severe head pain, it was sure if I had burst a blood vessel had a tumor or what. Had a CT Scan, fine, had a lumbar puncture - bang, massive headache on top of what I already I had. I couldn't move without needing a bucket. This went on for a few days, I dehydrated pretty bad too. The wedding was looking very dodgy at this stage, towards the end of the week I was rushed to have an MRI, wasn't showing any improvement, but I knew in my heart, I was worse due to the lumbar puncture, but they wouldn't have it. I wanted to go home and recooperate, naturally, I couldnt sit up so couldnt go. Anyway, within 12 hours I had the all clear from the MRI. Right, thats that, I'm discharging myself. I spent the whole night, pressing the button on my bed to raise me up, i was determined to get home. Late the following afternoon, I was going home, so put of a fake persona, when no nurses around I had to put my head down! I laid down for the 50mins journey home, straight to bed, bucket in hand!!
Two weeks into August, still no better. A doctor told me I'd have to have my spine plugged (filling the small hole made by the lumber puncture with blood) couldn't guarentee I'd be well enough for my wedding on the 22nd. Or, I could try drinking Isotonic drinks and eat ready salted crisps - believe me, eating anything was the last thing on my mind. Anyway, worth a try. Wow, what a change within a week, I was on the mend, I could actually get out and about without the bucket!!!
Had a fantastic wedding day and was on a high for weeks.
Then I started to detiorate yet again, I was exhausted at whatever I did, November 2009 I was diagnosed with ME. Was gutted, newly married, new life.
I coped for a year, but now, I mainly stuck to my bed, if not in bed, in the house. I rarely go out.
But I have to carrying on my support group, no matter how tired I am afterwards, it cheers me up no end to meeting new people and seeing friends.
Its learning to pace. To rest before and after any event is very important.
sorry for carrying on, but once I got going, wow, never wrote this much in any essay at school!!!!