Saturday, May 03, 2008

I woke up very early on Friday morning. When I say very early I mean I had only gone to bed a few hours before and should have been sound asleep. The culprit was my hands, which were feeling rather odd and throbbing a bit, as well as feeling....well, clownish, which isn't as amusing as the description suggests. Just almost numbish, achy and awkward.

Being a mature grown-up independent woman I promptly woke A up to tell him (as clearly he needed to know at 3.20am that my hands felt a bit funny.) We couldn’t see anything visibly wrong and I eventually got back to sleep.

When I got up for work I jumped out of bed (am still in the process of loving my job) and yelped in pain as I put my weight on my right foot. It felt like I had sprained it, thoug I was fairly convinced that unless A booted me out of the bed as penance for my earlier disturbance, I couldn’t have physically done anything to it.

As I attempted to get ready for work I quickly realised this wasn’t going to happen. I was lolloping along like a doll that’s lost the stuffing out of one leg and couldn’t grasp things as my hands were too sore. A tad worried by this stage I decided to retire to bed and phone Harefield. The on-call wasn’t sure it was related to transplant but couldn’t rule anything out either so suggested I ring in again when the transplant nurses are on duty.

I am not very good at having health stuff going on and not understanding what it is (you can imagine what a joy this made me to treat post transplant can’t you) so got straight online to talk to any other CFers/post transplant people who might have had a similar experience.

I hobbled to the GPs to get a blood test on Harefield’s recommendation and the GP confirmed what a friend of mine I had spoken to online had suggested it might be; “I suspect it’s CF related arthritis”.

I was not amused. I don’t know much about this element of Cystic Fibrosis and anything you don’t know about is instantly scarier. From what I understand, there is no exact diagnosis for arthritis, it’s just if you show symptoms for some time I guess you have it. Today things seem much better, fingers still a bit sore and stiff, and I am a tad limpy still, but definitely better. I shall wait and see what happens, and try not to panic about silly things such as “oh god, how am I going to do the adidas challenge then?!” when we have no idea whether this actually is, or even if it is how it will behave. For all I know it will fade away and this will be the only flare-up I ever have. Or it might be totally controlable....we will wait and see.

On a much more sombre note, the CF community was all very saddened yesterday as we lost Samantha, known to most as Princess Sam. I had known her for some time, in fact she had wandered to my room when I was incarcerated with my old lungs, a chest drain in situ, to offer to order some pizza on my behalf as I was unable to move.

Sam’s health deteriorated and she spent the last 6 months pretty much living in hospital. During this time she held her head up, kept on going, and even did an interview with Cosmopolitan magazine to raise money for the ward she was stuck on at the Brompton (said interview will be in June’s edition and which she told her mum she still wants to go ahead...even though she will not get to see it.)

If you get a minute, please do have a read of Sam’s blog. It’s incredibly open and honest, and frank just tells it like it is really. She was a wonderful girl with a huge heart and will be very very sorely missed. Her family and her friends are in my thoughts right now, and I just wish so very much (and get cross thinking about it) that she had received the transplant she so desperately needed and so richly deserved. As Oli points out on his blog, it makes absolutely no sense why some of us are saved and others die, all we can do is use this sadness to fuel the fight to raise more awareness. Job for today if you are reading folks, please show people this beautiful girl who lost her battle yesterday and tell them to get online and sign up to the organ donor register.

Thank you


Waiting For Ling-Ling said...

I'm so very sorry, I had been following Sam's blog and praying for her daily-I was hoping that her "silence" was due to her transplant operation.
My condolenses to her friend and family,

Daniel said...

I don't know much about CF Related Arthritis, but I know a bit about "old folks Arthritis" and it tends to flare up from time to time unexpectedly, becomes very annoying and then disappears so hopefully your's won't hinder you - touch wood.
Loosing someone as precious and young as Samantha will always spurr me in particular on to do more to raise awareness of CF and I'll never stop until a cure/deterrent is found. She deserved a life, as do many many more like her. She was special and she won't be forgotten for her battle, for her courage and for just being her.

Mad Asthmatic said...

I met Sam (only once or twice) and her mum (more frequently) during my own stays in the RBH. Her mum always had a smile and a few words for me whatever she was feeling herself. I am so sad. My thoughts and prayers are with Sam's family and all the families who are losing loved ones due to time running out.

Jac said...

Thinking of Sam's family at this time. Also thoughts with you Em for the loss of such a special friend

Anonymous said...

Em, I had a few 'flare ups' in my twenties. I realy hope yours is just that and that it goes away as quickly as it came on.

The photo of Sam is lovely, I don't think I ever spoke to her directly but I'm thinking of her and everyone who's grieving for her.

Audrey xx

Anonymous said...

Hi, I don't know a whole lot about CF related arthritis, but I just started looking up some info on supplements that can help because my husband (who has CF) recently started complaining about some joint pain. I found this discussion on the benefits of herbal supplements like tumeric and garlic. Apparently they can help decrease joint pain. Again I don't know a lot of the details on this but it might be something to try. Good luck :)

Anonymous said...

Non-CFer, so I can't have a very good grasp on any of this, but I have lost one CF friend to death (someone you have at least crossed paths with as well), and even though it was expected, the permanence hits like a ton of bricks. I hate to be shallow, but it almost seems like somebody so youthful and vibrant-seeming is grieved for even more.

Anonymous said...

I miss Sam so much already; so i can't begin to think how her family must be feeling. I've looked at her picture so many times over the weekend and thought that something has to come of yet another needless loss. Blog so beautifully written as always.

Anonymous said...

Ooooh, being ditsy at this time of the morning and meant to add... glucosamine supplements can help joints too. But if your arthritis is at all similar to mine, you will just get flare ups and plenty of periods of relief xx

Gilly said...

Although its not CF related arthritis, I do have arthritis, and its true glucosamine has helped me massively. I have it in my hands around the thumb joints and my knees. Some days it hardly bothers me and some days it hurts, but its never kept me out of the gym and hopefully it never will!

I to am very sorry to see another battler from the Cf community lose the fight. Its true it spurrs you on to raise awareness, its just a shame that people that aren't affected never take the time to notice such things.

Anonymous said...

I am 26 with CF (waiting for a transplant in the US) I have been getting arthritis "flare ups" for years. They come with no warning for me last anywhere from a few days to a week and then I feel better. The only thing I can do is take ibprofen and hope that it helps! I usually get them once a year or so. Hope you are feeling better! :)