30 things

30 Things You May Not Know

1. The illnesses I live with are:

 Fibromyalgia, Joint Hypermobility, Asthma, Depression & Anxiety

2. I was diagnosed with it in the year:

 Fibromyalgia 2008

3. But I had symptoms since:

Some since birth, some since my teens.

4. The biggest adjustment I’ve had to make is:

Having to rely on other people, & government systems that are as unreliable as myself.

5. Most people assume:

That I am too young to be disabled.

6. The hardest part about mornings are:

 Having to get up because I am in too much pain to lie there, when I am very fatigued. 

7. My favourite medical TV show is:

Helicopter Heroes count, I like the real ones!

8. A gadget I couldn’t live without is:

My laptop. Social life & Uni work would be none existent without it!

9. The hardest part about nights are:

Getting to sleep or going out cold before I can take my meds, or brush my teeth.
10. What do you take?

 17 tablets a day, 2 inhalers.

11. Regarding alternative treatments: It is called alternative for a reason, it is an alternative to rigorously tested, safe, reliable treatments...

12. If I had to choose between an invisible illness or visible I would choose: I live with both, invisible means that people treat you as though you can do anything, and visible, they treat you like you can't!

13. Regarding working and career: I have neither, but I use what skills & energy I have to help others I am working on getting a degree in physics, so I can play with particle accelerators!

14. People would be surprised to know: How much pain, physically & emotionally I am in everyday.

15. The hardest thing to accept about my new reality has been:

Realising my limitations, I am still new to a lot of this, I am still young & want to do things, a lot of them I just can't.

16. Something I never thought I could do with my illness that I did was: Have a social life: I love my sceptic meets & geek nights & improv.

17. The commercials about my illness:

In the UK there are none. But I am glad that no one is trying to sell me anything for it. I trust my doctors.

18. Something I really miss doing since I was diagnosed is:

Seeing my family & youth work.

19. It was really hard to have to give up:

regular sex, beer & my savings!

20. A new hobby I have taken up since my diagnosis is:

 I read so much more now!

21. If I could have one day of feeling normal again I would:

 I would get up early, go earn some money, go for a run or swim, rock Oli's world, have a beer & spend all night dancing! (as long as I didn't have to pay for some of it in the morning!)

22. My illness has taught me: 

To respect myself & other people.

23. Want to know a secret? One thing people say that gets under my skin is: You are too young to be disabled!

24. But I love it when people:

Come over to see me, take me out for lunch, don't need me to explain that I can't do certain things & make me laugh my socks off! (This is for my family, my best friends & kind random strangers)

25. My favourite motto, scripture, quote that gets me through tough times is: Carpe Diem! Corny but it gets me through.

26. When someone is diagnosed I’d like to tell them:

Don't be afraid to ask for help, to tell people what you need & don't need, to have a bad day. The everyday stuff shouldn't be a chore

27. Something that has surprised me about living with an illness is:

 That actions speak louder than words. (*Is cleaning/cooking for you* is better than "I am always there for you")

28. The nicest thing someone did for me when I wasn’t feeling well was:

Oli has done so many things, I always consider them the nicest, because he works the hardest.

29. I’m involved with Invisible Illness Week because:

I was visibly vocal about being disabled!

30. The fact that you read this list makes me feel:

That you may have a longer concentration span than me! I hope you enjoyed it, your prize is a sweet....knowledge that you know more about what I, & other disabled people go through daily!

FMS Quiz 11-05-09

Fibromyalgia quiz

1. What does the word fibromyalgia mean (fibro-my-algia)?

2. How many fibromyalgia tender points are there?

3. Name 5 (or as many as you can) symptoms of fibromyalgia (there are more than 5)

4. Name 3 (or as many as you can) pre-existing conditions that can lead to fibromyalgia

5. How many people may be affected with fibromyalgia in the UK?

6. What sex is more likely to have fibromyalgia (extra point for getting the ratios)

7. Name 5 (or as many as you can) physiological/anatomical differences between healthy people and people with fibromyalgia

8. When is the UK fibromyalgia awareness week?

9. Name 3 medications and 3 treatments that are used to help people with fibromyalgia.

10. What can you do to support people with fibromyalgia? (The best ideas get a prize)



Did you get to the end? Unsure of anything? Then you can CHEAT! I don't mind, go look it up seriously ;)

Parcel Force Forced Parcel Pain! Contains A Swear!

Damn it, I sent a letter of complaint about this rude guy who saw I could barely stand up (bad knees day) then proceeded to hand me a parcel in my left hand (weak) which I dropped and swore (motherfucker!) Here's the letter anyway.


Hello, I have just had a package delivered (10.30am) and the delivery man was extremely thoughtless. He buzzed the flat repeatedly when I could not get there quick enough to answer him, I signed for it having to lean against the wall to do so as I use a walking stick in my right hand and also write with that hand. Then, after he watched me struggle because I could not support myself without my stick, he handed me the package (of 4+ books) in my left hand and promptly turned and left. I had to drop the package as it was too heavy for me to hold in the one hand, I swore, quite loudly as it really hurt me. He could have placed it on the floor for me seeing that I was struggling. This man was very impolite and thoughtless and caused me pain. All I'd like this time is an apology from yourselves and the delivery man and something to cheer my flat up now that I can't leave it today while my left wrist and arm recover and shoulder recover. (I’d gladly talk specifics about my disability if you need to.)

Typing one handed,
Claire Smith

This guy has really pissed me off with his ignorance and uncaring attitude. Disabled-Hater or ignorant git? Either way, that's no excuse for not being a decent human being.

These things I assume:

These conditions are not my fault.

These conditions don't get in MY way. (Proved by acheivements, my motivation and the love I give to other people.)

I may have days where I am limited to do one thing but the sky's the limit for everything else.




UPDATE: I have had a reply and an apology from the customer service people, they are going to contact the local depot (which is up the road from me) and see what they say.

Email to friend on wearefibro.org

Sorry for the long email, I am also going to blog this, I need to get it off my chest (and wont be using guiaifenesin for it!)

I was reading fibrofix.com and some of the comments Anne has left on this website that are very misleading and have no basis of scientific fact, there are no obvious journal links or studies etc, and there are adverts on there too (whether she receives payment for those adverts I don't know, or care.)


It saddens me, the state of this world when people suffer and there is always someone trying to make money from it. People with FMS are often let down by the health services and people become so desperate they will try anything, and it's this preying on vunerable people (like theGuaifenesin that has been proven to be no better than a placebo when it comes to treating FMS) that really makes me angry, I want to stand up for people but feel a bit useless and lost with it all.


If you can get hold of a copy of Ben Goldacre's Bad Science, or visit his website www.badscience.com (I think) The book helpfully explains how fair tests are done. It opened my eyes. Being a newbie scientist I feel it's my job to make sure that truthful answers are given and how science (and pseudoscience) relates to people with FMS. I'm honing my skills to kick the asses of people who make false claims and raise the consciousnesseseses(!) of people who believe these claims because they don't have all the information.

http://www.fmnetnews.com/resources-alert-product6.php

Completed Physio feel really good for it, it's the kick in the bum I needed. I feel better and better each day with enough motivation to step up my routine. Still trying to get to a warm water session but my pain has subsided just enough that I can concentrate on my daily routines.

The pictures are of the pool where I did my physio sessions, the people there were really nice and friendly and very helpful, I really would love to go back (though the 8.30 am ambulance was a bit much!) I should ring today!

Hi It's been hard having to adjust to life with Fibro, the worst thing is the feeling of frustration when the fibro limits your life.

There's nearly always a definite beginning for fms, people have had colds to near fatal accidents.
I have previously posted my story but I am goin g to touch on depression and how I am turning my promblems around (I still have them, I am providing no miracle cure!)
When I first did my back in I was suffering with depression, you'd have to be a Vulcan not to feel low if you went through the same. I started on this course: http://www.beatingtheblues.co.uk/btbOnline/introVideo.jsp was referred by my GP and since being diagnosed I started again when I got to Manchester. The first time was great, it helped me out of my depression and helped mine and Oli's relationship. The second time is a lot harder. A lot of the activities aren't relevent to what fms sufferers go through, making an activity sheet was EASY! Sticking to it, even harder, not because I am lazy but because it's not up to myself when I can do activities like seeing friends but when the Fibro says so. I can't make all my appointments so what I learn just goes out the window.

At the moment it feels like the Fibro has me I don't have IT!
This leads to me feeling low, at times suicidal and most of the time pretty useless. There are lots of things that I can do, I beleive it, it's not an empty statement. I can't help feel that I believe both, displacing one with the other isn't going to work as I have evidence for the both of them. Renaming it: "just a flare" or saying "it'll pass" is just denying what it really is a DISABILITY.
Although a flare temporary thing, Fibromyalgia isn't, it's hard work and in cognative behaviour therpay talk it's: Permanent, Internal and General.
It's permanent because there is no cure. It's internal because it's my body effecting my emotions, and general because it effects my life everyday in everyway.




I hate to compromise with Fibro, I fight it, trying to be normal. But how can you with limited spoons?



They call it a disability for a reason.

Compromising your life with an illness is what a lot of ppl deal with everyday.
There are a lot of reasons why I love being disabled:

1. I am totally sexeh! I have put on a bit of weight and some of it has gone to my BOOBIES, I am happier with myself now my curves are guilt free!
2. I try to make the most of my time, doing something educational or creative.
3. I value my health, I don't drink heavily and I know how to listen to my body
4.I value my relationships, my friends and family know that their fibropie tires easily and all our time is QUALITY. Me and Oli plan ahead but there's no pressure if things dont go our way.
5. Strangers are a lot nicer to me! Letting me cross the road, talking to me, giving up seats. whichleads nicely onto...
6. I have more confidence, I can talk to anyone and I am approachable now with my lil Letty (my stick, she lettys me go places I couldnt without her.

So my points are: I AM DISABLED but am FREAKIN' AWESOME!

Hospital again

I was in A&E today, was walking form the Asda to Hulme, which I usually do on a Wednesday for my cognative behaviour therapy session and then all of a sudden I felt a raging heat from my body and severe pain, i could barely walk and cried all the way to the Zion Centre, where I got in and told the workers I was in agony. I called my Dr's...half day....called the out of hours...couldnt get me transport til 7pm (it was 3pm)Called an Ambulance and the paramedics were 2 ladies who were ace!!! Had Gas and Air, hated that! And waitied 2 hours to be seen, they gave me Tramodol and sent me home (with a prescription for more) and here I am all smooshy. With lovely flowers from Oli and some chocolate and a hot water bottle I got more care at home than I did at the hospital, at home with Oli I am a person (and Geth too, he's pretty good at keeping me in Choccy). Oli's a star. I think I have told him a stupid amount of times how much I love him today and wrote him a really shit poem on a post it note too!

Nights x

The cost of medication

I got a really sore throat today, means I got to go back the Doctors cos the lozengers, (tasty as they are) aren't working. I was there today, sorting out more pain relief, got more pills for period pain but it's good news, my Dr said I can take my contraceptive pill non stop for 3 months which means no more periods during that period. Which means less pain for me and less cost in painkillers.
My doseage goes up when I get my period, my Dr said that woman with FMS tend to have bad periods (reasons unknown!!!)
I am so worried about the cost of the pills, it's £7.10 for a prescription, my list of Medication is now:

A month:
Trazodone
Diclofenac
Lyrica
Co-codamol
total: £28.40

3 months:
2 inhalers
Pill (it's free until I am 25!)
New anti inflams
total £21.30

A yearly total of: £426

(Correct it if it's wrong)

I have applied to see what help we can get, we get a little, but not with prescriptions even though I don't work and we are on a low income.

Hopefully it will be sorted, hopefully I don't have to fight with the DLA over how my body works. Hopefully I get the middle/higher rate I deserve.

For those who have physically spent time with me know that I really struggle, I walk at a snails pace even with Letty (my walking stick) I rub all my painful parts, parts of me just "go". I can't stay out for long (nowhere seems to have comfortable seating!). I have to sit down regularly. I get dizzy, I wobble and almost fall over! So send me your "good lucks" I need 'em!

Hugs for my 2 readers!

Claire x

MY First Fibro Musing.

It's been a while since I have blogged, even when I was first diagnosed with Fibromyaligia (FMS) and Hypermobility (HS). I was diagnosed on December 27th, since then life has been a whirlwind of collecting information, handing it to others and telling relevent authorities about it.

My family have been amazing, and have put up many post on facebook* There's nothing better than having family and friends around you. We have an affectionate term in our family for when you are ill/broke/otherwise incapacitated, which my boyfriend doesn't like, but I do! Spacker!

I am taking that word back - I am happy to be a Spack!

My mum and dad are pretty much broken (I do think my dad has FMS but that's another story!) and my sisters have their unhealthy moments, so we are the Spacker Smith Family!
I like it that way, it's nice to know that when you are ill that other people know EXACTLY how you are feeling.



*My sister had suffered for a long time with fibromyalgia before she was diagnosed. She went thro (sic) all sorts before she finally got the answers to the pain she was going thro(sic). Im pleased that she can finally get the treatment she needs. She gets on with her life even tho every day is painful, she hasnt let it break her spirit. I hope people become more aware of fibromyalgia and its effects so more people can be helped.

*Ah, I'll love you no matter how spaccy you get =)