Friday 30 September 2011

Whats going on..

So i havent blooged in a few weeks so i thought it was about time to update you all..
so on 19th of September i went to pain management clinic and meet my specialist who is lovely. shes made me stop a lot of my tablets mainly tramadol as its not the main type of tablet for fibromyalgia and apparently i was taking around 80mg of morphine a day with it. and now im on MST which are like slow releasing morphine tablets and they feel so much better im still in pain but not so much im having some bad days with them though still. Ive also suffered with some side effects on them so had to have anti sickness tablets and antibiotics to help sort them all out.
My specialist, has also given me a relaxation CD that i have to do to relax every day for around 20 minutes because of the stress that the disease is causing me and of course with uni now being back im even more stressed.
Then next big bit of news i guess is that UNI is back :) im glad im back into the swing of it only been back a week but its definitely great and keeping me motivated, just got to keep on top of things, so far i haven't crashed at uni but had a lot of work, and i do feel like crashing but im going to finish this blog and then do some more work while trying to just relax in the sun. which is not like me at all ha!

i guess the next few weeks are going to be stressful with work from uni and assignments coming in but ill try keep you all updated, i just hope that i don't crash at uni.!!

Saturday 17 September 2011

Washington .D.C.

So from the 8th September - 14th September i spent some time in Washington D.C. America.. it was absolutely amazing!!! i went with university as part of my course...doing forensic science going into my 2nd year,
had a fab time did so much but did over do it one day and ended up having to rest up for one day which was a bit upsetting.

we went to the armed forces toxicology lab, we did a bus tour of Washington saw absolutely everything, did alot of shopping, went to madame tussaudes, saw the pentagon, and went out to ruby Tuesdays and the hard rock cafe we also went to the crime and punishment museum the engravement and printing bureau and the George Washington university. we did absoultely everything and i had a fab time,

i met some amazing friends which made the whole experience better, had some long days and im extremely tired still and recovering

then Thursday the 15th September was my 21st birthday i had an amazing day with the boyfriend got some lovely prezzies and plan on going out Tuesday for meal and drinks:) so happy i have the best family, friends and most of all boyfriend, and parents :) x
i cant wait too get back to uni and start second year its all starting to be a bit more promising at the moment! and on monday i have the pain management clinic so hopefully should get something will blog after that x

Friday 2 September 2011

So what is Fibromyalgia?

So many people have asked me what is fibromyalgia, so here is the medical definition, and my own definition of it and what it all entitles i just thought i would try and explain a bit.

So in my own terms, fibromyalgia is just a widespread chronic pain disorder and the pain level interferes with sleeping and daily life.
On looking at the UK Fibromyalgia website, it states that fibromyalgia is:
FMS (fibromyalgia (fi-bro-my-Al-juh) syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.

The pain comes from the connective tissues, such as the muscles, tendons, and ligaments. FMS does not involve the joints

(http://www.ukfibromyalgia.com/what-is-fm.html)

Everyday i suffer with pain all over, and i can't get up without my knees aching and my fingers are so stiff i cant move them. its a struggle getting from bed to the bathroom especially when my knees are bad. most days i don't do much apart from get up and potter around the house getting my self dressed, etc, i go back to university in a few days and im really worried because i cant handle pottering around the flat at the moment let alone going to university to learn, but that's a new challenge.

The NHS describes Fibromyalgia as:
Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body. 
The name fibromyalgia comes from three Latin words:
  • 'fibro' meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
  • 'my' meaning muscles
  • 'algia' meaning pain
However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:
  • difficulty sleeping
  • headaches
  • irritable bowel syndrome (IBS)
  • muscle stiffness

The NHS go on to explain about the patients outlook on life,
There is currently no cure for fibromyalgia, because the cause is unknown. However, there are a number of treatments that may ease symptoms. Treatment tends to be a combination of:
  • medicines – such as antidepressants and painkillers
  • talking therapies – such as counseling
  • lifestyle changes – such as better sleeping habits and relaxation
In particular, exercise has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.For most people, the symptoms of fibromyalgia are permanent, although they can vary in severity. There are several lifestyle changes that can help to relieve your symptoms and make your condition easier to live with.

(http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Introduction.aspx)

The are also plenty of symptoms to this syndrome,
Your symptoms may sometimes get better or worse depending on factors such as, changes in the weather, stress levels, and how physically active you are,
The symptoms are,
  • pain- widespread,(an ache, a burning sensation, a sharp stabbing pain)
  • Extreme sensitivity, you can become extremely sensitive to pain all over your body, you may find the slightest touch very painful,, hyperalgesia- when you are extremely sensitive to pain, allodynia- when you feel pain from something that should not be painful at all, such as a very light touch
  • You may also be sensitive to such things as, smoke, certain foods, bright lights
  • stiffness, most severe when you have been in the same position for a long time , like first thing in the morning after sleep.
  • muscle spasms can affect sleep
  • fatigue, extreme tiredness, can range from a mild, tired feeling to exhaustion often experienced during a flu- like illness, something severe fatigue may come on very suddenly and can drain all you energy , where you may be too tired to do anything.
  • poor quality of sleep, you can often wake up tired even when you have had plenty of sleep, this is because fibromyalgia can sometimes prevent you from sleeping deeply enough to refresh you properly 'non-restorative sleep'.
  • cognitive problems ('fibro-fog'),  trouble remembering and learning new things, problems with attention and concentration, slowed or confused speech,
  • Headaches, if you have pain and stiffness in your neck and shoulders from fibromyalgia you may also have frequent headaches, these can vary from being mild headache to severe migraines, which may also involve other symptoms such as nausea.
  • irritable bowel syndrome (IBS) you may develop IBS, its a common digestive condition causes pain and bloating in your stomach, it can also cause constipation and diarrhea.
  • Other symptoms can include, not being able to regulate your body temperate, restless leg syndrome, tingling, numbness, prickling or burning sensations in your hands, feet, tinnitus, (noise in both or one ear which comes from inside the body), unusually painful periods (in women), anxiety.
  • Depression, fibromyalgia can lead to depression this is because the condition can be difficult to deal with and low levels of certain hormones, such as serotonin, can make you prone to developing depression, depression can cause many symptoms including, constantly feeling low, lack of interest in the things that you usually enjoy, feeling tearful.
so i hope that this blog gives everybody a insight into what fibromyalgia entitles and how hard it can be too cope.

Tuesday 23 August 2011

Before diagnosis..

life before the diagnosis,

i don't know where to start really, i guess the beginning however i don't really remember much when i was little so according to my mum every day i would wake up and be in pain, one part of my body or another would hurt. she says that i never slept well and used to wake up in the middle of the night crying because the pain was bad. i remember telling her numerous of times that i felt old, i guess this is because my muscles would ache and i thought that is what old people would have rather than me.

we have gone to numerous of consultants and physios and i have had acupuncture, reflexology and even been to see a osteopath, none of these seemed to help the pain they used to try and help me for a month or so and be sent for MRI scans, blood tests and every other test they wanted to give me. however they usually came back as nothing being wrong.

i have been diagnosed with so many other things, sciatica, one leg longer than the other, twisted pelvis,chronic fatigue syndrome (which is apparently closely linked) even the last diagnosis was arthritis. (im sure there was others as well  but i cant seem to remember)

 Then when i came to university and going to the doctors here and then finally getting somewhere was the best feeling.
i remember that school was terrible, i used to have numerous days of from school, due to not being able to move, ( im sure everybody used to think i was faking) i used to get so behind on school work and when i went back i would be lost as i didn't know what they were doing. however i made it through my g.c.s.e.s, and after that i had a year out because i was knackered and could cope with doing my A Levels, so after my year out i went to college where i did well and made it into university. where i am now successfully studying forensic science, i do miss quiet a lot of days but i have a great support team of friends and lecturers who help me through. i passed two of my modules this year, and unfortunately failed two but only just (so i have done my resists in them)

so i guess before i was diagnosis life was hard and it was all down to this.

Last few days

just an update of the last few days:
so on Thursday i went to the consultant and spoke too him and that's when i got my diagnosis.(this will be in another blog)

on Friday Mathew and i spent a few hours up at the cathedral and had a lovely time, we walked around and saw the beautiful upper part of the town, we got an ice cream from the ice cream parlour ha was lovely, after we had to come home and then go into town as we had a few things we needed too do, after we got home after town i was shatter and had a nap (these are a regular thing these days) and then we needed to go food shopping as we had no food not even enough for dinner. then we had a nice relaxing day.

However on Saturday after the amount of walking we had done the day before i had obviously over done it and i was so sore that i could barely walk. so i spent most the day sat on the sofa watching TV and playing on the laptop. when Matt came home he made a lovely curry for us which was nice as i couldn't cope to make anything or hardly stand up which was upsetting was hard to go to the toilet and get in the bath.(but i had help from Matt)

on Sunday i was still suffering from Friday and over doing it so another day on the sofa, and Matt was going away for work tonight so i ddint get too see him which made things alot worse because i do rely on him a lot at home. however we spoke a lot on the phone all day and it was a nice relaxing day, but then it was bath time, (and no Matt to help) so i had too cope on my own and at least i wasn't as bad as Saturday. so i went to bed early after my bath which was nice as i had the whole bed to curl up :) was great.

Then Monday was great i was very busy i was having a very good day i didn't ache at all which was amazing (okay so i was still stiff in the morning but not bad) so i had a day of cleaning the house, the hamster and sorting out the spare room, i spent ages in there (as it was a tip), we don't have our wardrobes yet so our clothes are everywhere, however i have now put the in separate boxes/bags, so t-shirts, trousers, dresses etc and all folded neatly away (i even sorted Matt's mess) we can now get in the spare room and get dressed and get ready which is great (but i cant wait till our wardrobes are here). then i started to get ready for date night which i was so excited about as we hadn't been out together for such a long time, as i was either poorly or he was working. so Matt was on his way back from his work course which was good, however there was a crash on the road which made him late home. but however we still had date night, we went for a lovely meal too nandos, then we went for a few drinks (well he did i stuck too the j2o as of all the tablets) then we went too see inbetweeners at the cinema. IT WAS AMAZING! however during the film i developed pains in my kidney (surely not the start of a kidney infection) i stuck it out and after the film we walked home and as it was quiet late it was bed time,





Tuesday (today) i have phoned the doctors and im waiting for an appointment too see whether it is a kidney infection, i also have a sore throat, but i feel okay in myself (the aches and pains), but we still have the rest of the day, hopefully a pain free day though.

Sunday 21 August 2011

30 Things About My Invisible Illness You May Not Know

So i just found this and thought it seemed apporpriate to post. i think your ment to do it day by day but hey im going to do it all :) 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: fibromyalgia.

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: i was 10 so 2000.

4. The biggest adjustment I’ve had to make is:i haven’t really had to make adjustments because i have lived with it since i was little but i guess i just cant do things that i used to or that other people my age can do.

5. Most people assume:that there’s nothing wrong or i just want to get out of something.

6. The hardest part about mornings are: being stiff and trying to get to the toilet quick enough when my legs are so stiff to walk on.

7. My favorite medical TV show is: probably the real a and e on pick TV ( don’t really watch medical shows)

8. A gadget I couldn’t live without is: i guess my phone or laptop otherwise i wouldn’t really be able to socialize with my friends or my parents as well.

9. The hardest part about nights are: the tiredness and not actually being able to sleep properly

10. Each day I take 20 tablets, since the doctor told me not to take another kind of drug.

11. Regarding alternative treatments: i cant wait to find out some more.

12. If I had to choose between an invisible illness or visible I would choose: i wouldnt really change myself im just glad i finally have a name too it so i can at least start to control it in some way.

13. Regarding working and career: im at university studying forensic science, im very optimistic about what ill be able to do once im finished it very hard to think about but just taking it step by step at the moment.

14. People would be surprised to know: its not all about fibromyalgia i am me that’s just apart of me its not who i am.

15. The hardest thing to accept about my new reality has been: that i might not be able to control the pain, and there isn’t a cure.

16. Something I never thought I could do with my illness that I did was: for my 19th birthday do go ape (a kinda assault course in the trees) it was very difficult but i wanted to do it.

17. The commercials about my illness:i dont think there is much i guess nobody really understands about it.

18. Something I really miss doing since I was diagnosed is: i guess ive never had too miss anything because i have never really had time where i didn’t have pain, but i would say probably going out with the friends for a catch up and being able to walk without pain!

19. It was really hard to have to give up:i guess i haven’t really given up much just changed the way things are, but definately miss cholcolate or the occasional drink.

20. A new hobby I have taken up since my diagnosis is: blogging! ha just too keep people informed.

21. If I could have one day of feeling normal again I would: i dont wish to be normal just pain free so i could get comfortable.

22. My illness has taught me: that its not about the illness its about how you cope.

23. Want to know a secret? One thing people say that gets under my skin is: have you taken your tablets, when im in pain, or you cant do that it will make you worse.

24. But I love it when people: look after me and help me when i ask, like when im getting in and out of the bath, my boyfriend helps me just things like that.

25. My favorite motto, scripture, quote that gets me through tough times is:i have two both by Marylin Monroe my first one is
“I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they’re right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.”

and the second is

“I’m selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.”

26. When someone is diagnosed I’d like to tell them: don’t let it rule your life at first its hard not too because of the pain and not being able to do much. however it will get better.

27. Something that has surprised me about living with an illness is: if i push myself too hard i do have days after where i cant do much. just have to take it day by day.

28. The nicest thing someone did for me when I wasn’t feeling well was: just hug me and keep me company :)

29. I’m involved with Invisible Illness Week because: i think its an ideal way too show people about the illness and inform them about myself.

30. The fact that you read this list makes me feel: that you are interested to learn some more and i would be grateful to everyone if we could just spread the education that fibromyalgia is a real illness and should be more widely recognized by professionals and the NHS.

Hello and welcome

Hello,
i was diagnosed with Fibromyalgia on the 18th of august 2011, however i have had many symptoms and been living with it since i was around 10 years old so probably about 2000. so i wanted to create this to talk about my life and coping with Fibromyalgia (FM). simply because i feel if i write it down and then people can see how I’m coping, getting on and everything else. also if it can help someone else with what there going through or what they should know about people with FM then i think that the world will get more educated about it.
so in the next blog i will tell you about my life before diagnosis, i shall also discuss how I’m coping what medicines and things that have been suggested to me for helping with it in later blogs.
i hope many of you find this interesting and useful.
thanks Katy xx