The random rants and meaningful musings of seven digital divas (who happen to have MS)

Wednesday, July 18, 2007

Sorry, long post...

See See Rider
I went yesterday to have my fitness form signed. I walked all the way to the GPs, which’s the furthest I’ve walked since getting ill. I was proud of myself, but I also felt dead, I let my GP know this as soon as I walked in his office. He wasn’t impressed. I gave him my intensely persuasive speech with a forced smile in between every sentence. He was a good listener, strangely emotionless and he didn’t budge or interrupt me once.

But when I finished he started his speech. He reminded me that I have tests, he pulled out my files and went through my case history of such bad relapses I had fits and temporary paralysis – basically telling me that if I still have the receipt I should take my brain back for a full refund and not even bother to exchange as the store must only stock faulty goods. I was on no medication and if anything happened to me he was liable.

Then just to rub it in he reminded me that most people with MS die young. He crossed his arms “ I cannot, and will not sign the form “. Just as quickly as his past negative response had spurred me on to prove him wrong, his repeat rejection had spurred me to give up. I was heartbroken. I thanked him and excused myself before he could see the tears welling up. I hobbled down the corridor where 5 seconds later he caught up with me, the flood barriers had already broken. He apologised and told me if wanted to talk about it I could come back anytime. The patients in the waiting room must have thought he just told me I had a month to live the way I was sobbing! In a similar way he had just crushed my world, but I knew he was genuine as his eyes were red and he fled before I could see them water.

I didn’t know why I ever bothered. Why do I even bother to get up in the morning and try to have a normal life as possible. Why do I try to do things to make myself happier when in the end it was just a waste? I go on everyday filling my time doing things that I can do that pleases me, I don’t complain ever about my aches or pains. I pretend everything is ok when its really isn’t, but what’s hard is believing everything is ok when it really isn’t. Its easy for the people around me to see this and let me get on with things, but what normal people don’t realise is just how much hard work this is. I give myself compliments on how well I’ve handled my situation so far, the sad thing is only I know how hard its been for me.

So why do I continue this way? Because isn’t it what you’re supposed to do? Fight the illness, stay positive, and all the other half-arse advice friends and relatives give you. Coz if I didn’t do this I would be giving up. What angers me the most is when I try too hard and cross this imaginary line MS has made, then I’m reminded who’s boss. It isn’t fair.

My boyfriend, having made clear how he feels about me skydiving, went ahead and did something he wanted to do that I was very unhappy about. But he doesn’t need anyone’s consent to do this, he does what he likes. And now his heart is so set on this thing, nothing will change his mind. I angrily envy him and it’s not his fault, yet I’m convinced that my life is harder and I deserve more happiness.

Does MS really mean you can’t have this simple privilege of being happy? But life isn’t fair. Why did I get MS and not my sister? I look at her now and I can’t imagine her going through this. She worries about how thick her eyelashes are when my alopecia has cost me a softball size bald patch at the side of my head.

I know this is an angry rant. It takes an average of 5 years for someone to come to terms with a disease like MS. I’ve been diagnosed less than a year and ill for two and I’m only 20. No matter age or experience, I think we all have a right to be angry and sad in between fighting for our life back.


Wednesday Addams said...

(((((((((((((((((((see see))))))))))))))) what a HORRIBLE there anyone else you can change to?

Incidentally he gives the impression of knowing sod all about MS...most people with MS do NOT die young!

Candy Cane said...

yeah, thats coo-poo! the life expectancy for someone with MS is much the same as everyone else. you arent going to die young sweetheart.

the most important thing i learned when i was coming to terms with ms was not to fight it. its a waste of my precious energy. i cant fight ms, it does whatever the hell it likes. all i can do is do my best to get up in the morning, deal with the day i have... be it good or bad... keep myself happy by chatting in JJs, making cards, making jewellary etc etc and keeping going one day at a time. I have MS, MS has my body, but it cant take my personality. YES its changed me for both good and bad, made me stronger and weaker, made me happy and sad.. but thats life

i dont believe in staying positive, i believe in staying ME

Anonymous said...

I think what helped me in long term acceptance of my disease was realising that planning things "for when I'm better" (ie not relapsing) was only making me miserable and that accepting I am ill and have limitations and planning with these in mind made my goals suddenly possible. I was achieving things. Yes seemingly pointless to many or it may seem like "giving in" to some, but hey I'm pleasing myself here and not everyone else.

But you are right, no matter how far down the acceptance road you wonder, angry days will still happen.

you wrote a beautiful entry in your anger.


Naughty but Nice said...

I really don't known what to say see see. What a bummer and you had your little heart set on that sky diving. Eventually you will probably see why your GP had to say no, but not now as you are too angry and you have every right to be.

We are all entitled to a little "woe is me" time and rant time - so you let it all out, it will make you feel better!!! And here's a hug to help ((((((((((((((see see)))))))))))

Julie Howell said...

If your GP said 'most people with MS die young' I hope you will consider reporting the incident to the MS Society. There is not a shred of evidence to support what he said. In fact, all the evidence shows that people with MS enjoy the same life expectancy as everyone else. What you have described sounds like gross medical misconduct to me. Although writing about it on your blog may make you feel better about it, he needs to be challenged formally if he is to be stopped from saying such things to others, less strong than you.

GPs are not experts in MS and there is much documentation available from the MS Society to refute what he has said to you.

I agree very much with Candy Cane. You need to learn to live with MS, not to fight it. Live well, be happy, find joy. Put your life in context and discover everything that's great about it. MS has taken enough from you, it doesn't deserve all your energy.

I'd seriously consider getting a new GP and getting an MS nurse to talk to about MS stuff. That would be a show of strength on your part and a victory. The relationships you have with your medical team are going to be among the most important partnerships in your life.

Good luch with it all x

Candy Cane said...

You're right GPs aren't an expert in MS jooly, I've had a headache for at least 100 years now and when i went to the DR and said i know headaches can be a symptom of MS, but how do i tell the difference between a headache and a HEADACHE he told me that MS headaches were rare and MS was generally a pain free condition. I almost kicked him in his precious parts and said and i suppose that doesnt hurt either! I though better of it though cos its hard enough to get an appointment without a restraining order.

see see rider said...

Thanks for all your lovely comments. I've just been away in the country side with a friend and feel much more relaxed. Although the GP did call me again to say he rang the British Parachute Association and even they said i shouldn't do the jump. I know its in my best interest, i just wish he hadn't caled me to say NO again!! Oh well I wont be running back to him any time soon.

Anonymous said...

What a terrible thing your GP said to you. It is not true. We don't have a shorter life.It is challenging and frustrating but you are still you.I have been dealing with this since 1988. I was 31 years old and not much was known at the time but it is NOT a life sentence. You may have to do things differently but it the still did it. I use a cane, have to rest when I walk...but I get there.
Hugs from Cape Cod,