Grrrrr

Silly MS!

Fairy tale

The three bears. The big bad wolf. The hare. All the villains are here. To judge a pageant of victims. Beautiful criminals of the other sort. Chewed. Digested and shite out as something else. Stories she would tell herself, in the middle of drinking. In the judgement between sobriety and sleep. Words she could manipulate to change how she grieved for them. How she organised her grief. Into rigid compartments. Brief addictions to each person that had led to one long term relationship with her own loneliness.

She saw it as a kind of poverty. A form of working poorness. Everything she had earned handed back to the struggle. A false insurance policy that denied her need for care.

She drew in pen. On the backs of papers she'd not read. Advertisements sent to some thriving person they presumed inhabited her world. She wrote letters. A cacophony of metaphors she never sent. Little doses of the cure she knew was looking for her. As she continued her flirtations with the disease.

She was still the same person. And a different one. There is change in repetition. The freedom of addiction making everything clear. It's splendid to be hopeless.

The villains are always on hand. The victims always ready to fail. Life is a fairy tale. Because just when you've rebuilt it, there's always someone there to blow your house down.

Prince

Prince took over my life!!

Hi all, I'm finally here to post a new blog instead of leaving quick comments. Life has been kinda upside down since the beginning of August and it's all because of Prince (the little purple funkster!!!).

As most people know he has played 21 nights in London and we went a total of 5 times!! (Yes we are mad lol). Now I know he's not everyone's cup of tea (no nasty comments here please Candy Cane lol), but I have to say he was absolutely fantastic. We have waited 5 years for his return (last time we saw him was in 2002 at Hammersmith) and he was well worth the wait. I have to say that he was the best we have ever seen him (and we've seen him a lot!!!) It's a little depressing that he has finished his tour but to be perfectly honest I don't think I could manage much more as it has completely knackered me out!!!

We were sensible and spaced the dates out (1st, 14th, 31st Aug and 6th, 21st September) and I'm glad we did as it was taking me longer and longer to get over the night. I still feel completely drained from Friday's show (which was phenomenal as it was the last night.) Sky news broadcast the first half hour live, but if anyone saw that do not take it as an indication of what he was like as it was a piss poor recording!!! ggrrrrrrr!!!!

Anyway now we can get back to some form of normality and get on with the things that we need to sort.

One of those things is the parking where we live. When I was moved here one of the stipulations my OT made was that there had to be parking. Well there is sort of. No one has a specified space but we were told that we could take any space that was free and just put a padlock on the post when not there so no one else could park in it. Well this worked fine until the post got knocked down about 2 years ago!!!! We have been trying to get it sorted since then. I've now been told that all the posts are being replaced (as most are missing) and that one space will be specifically reserved for me. Now I was told this weeks ago and, yes you've guessed it, nothing has been done and the last couple of weeks we have had some problems with people parking in there or across it so I can't get in it, (most of the neighbours are good as gold as they know we park there but one of the girls has got herself a pig ignorant boyfriend who has an equally ignorant son!!). So guess what my next few days are gonna be spent doing.

Anyway better go before I bore you all to tears ;o)

I have a job

I HAVE A JOB !!!!!!!!!!!!!!!

Now me going back to bed

Spot the wedding

Hi all! Brooke, good to see you. Wednesday, you really are superwoman!

In my last post I was all exited about walking again, I had forgotten how tall I was and so did everyone else. I was also exited about a wedding i was going to, it had always been my 'finish line'.

It was a big wedding, lots of money spent (very gaudy outcome, I have to say ) and i was NOT about to hobble or wheel myself. As I said in my earlier post, high heels were on the menu.

A week before the wedding, the dress i made specially for the occasion was ready and stunning. A few days before the wedding, I was ready and stunning too... or so I thought.

Thursday night (wedding on Saturday ) my right cheek has a red painful swelling. A bite? a Sting? NO! A SPOT! A humongous red spot boiling underneath my skin!

I never get spots on my cheeks, if anything my cheeks have been my only facial pride and joy, soft and smooth.

I panicked, What do I do? Whadoaydoooo?? I need to do something, I thought, I can't turn up like this!

So I went out, and for the first time since i was 13, I bought some spot cream!

Reduces redness and swelling in just 4 hours! it read.

I slapped a load on, covered half my cheek with the stuff.

Four hours later, nothing changed, so i put some more on! Every couple of hours I was smothering myself in it, the stuff was so toxic the fumes were making me dizzy. This has to be doing something, I thought, something this potent can't not be magically removing the beast!

Now here is where i learn my lesson... It did make a difference, a massive difference, the stuff was so strong and i smothered so much of it on my face. It left a chemical burn the size of a 10p coin. A deep dark angry red scab with edges like a volcano had just erupted.

It was Saturday morning already. The scab was thick, concealer was not even close to covering it up. So as a last attempt, and here is my second lesson learnt, i picked the scab open. Now it was a meteor that hit earth causing a fire, a flood, and lava to spill out of the huge crater. Yes girls, it was sticky and ugly, you can only imagine how the wedding went for me.

I hope this gives you nightmares!!

PS: Spot cream is an alien invasion in a bottle, designed to dissolve you alive when used.

Hey girlies

I really haven't got anything I'd like to say today but feel that I should post & let you all know I'm still very much alive & kicking.

You girls rock!!

Superwoman

How to be Superwoman

It can be frustrating having MS. Hey, don't beat around the bush Wednesday...it is frustrating having MS. One of the things I find worst is seeing my friends (or former friends, in some cases) running around, living normal lives, complaining about how busy and tired they are, with absolutely no idea of how bl**dy lucky they are...

Having MS doesn't mean your life ends though. You just have to rearrange your priorities a bit. Far and away the most disabling thing of all this for me is fatigue. So I've learned that if I have something coming up - particularly something important, a party or a night out - I have to clear the day before as much as possible so I can rest. At first I felt guilty about resting. Bad Wednesday, don't feel guilty - you have a major chronic illness, and are doing what you can to live with it.

I'm a full-time university student. Starting that was a big step - I honestly didn't know if I'd be able to do it, physically. I've had to take some time off sick (every so often my body says woaahhhhh!) and I'm lucky that my university is amazingly supportive...but you know what? I'm doing it! I have to be careful not to get over-tired, but I've managed to finish the first year and I believe that I'll finish the whole degree.

Living with MS is a juggling act. We have all the balls in the air - family, work, studies, social life, health. It's just a bit harder for us to keep them all there than it is for Ms Normal. But hey, who wants to be normal anyway? ;-)

Never joke

A lesson I have learnt today, and it is only ten to ten in the morning and I have been up two hours, is to never joke about anything, it will only come back and bite you in the butt. It has a habit of turning into Chinese whispers and someone is bound to take it seriously, then ring you up and rant at you.

Let me take you back to the beginning, where and when I first made a jokey comment. A few months ago I went into my local pub, my leg was a bit wobbly and one of the locals asked what was wrong, so I explained, that I have MS. Then I said as my ex had MS first I think I caught it from using the same toilet seat, everyone around seemed to see it as a joke, they laughed, and I did even go on to explain that I had the symptoms I have now that is being put down to MS since I was young so it's not really that. Not that hard to understand really is it.

That as far as I was concern was the end of it.

Then this morning I receive a phone call from someone who lives abut 15-20 miles away, ranting about the fact that her mother has MS and heard at a local day centre (that I didn't know exists and now wouldn't go to) that I have been going around spreading rumors about the fact that MS can be caught of toilet seats. No matter how many times I said I was joking, explained my story, told her I was joking again and again, explained that I told everyone at the time I was joking, she was not listening. I then went on to enquire how she got my number, which just got me confused, as she got it off someone I never heard off before.

For those of you who don't know, an ex of mine has MS, he wad diagnosed in 1998 and we got together in 2003, I got my diagnoses for MS in August 2004. Which is why I have joked in the past, but never again, about me "catching" MS off my ex and it must be from the toilet seat as that was once rumored to be the case. Really I am taking the piss out of the person/people who wrote that in the newspaper many years ago. I KNOW IT IS NOT THE CASE G-DDAMMIT!!!

So that's my lesson of the day. Don't joke. Don't try and be light humored. It just causes you stress later on in the day.

Sorry about my rambling rant, I hope it makes sense, and if not please ask and I will try to explain better.

(After re-reading and pacifying it a bit more, I think it is safe to publish. Sorry about any spelling mistakes I missed)

Understanding MS

I received this in my email today and thought I would share with you all as it is thought provoking and "fitting". It's a bit of a long one, but here it is:


Understanding what MS is

Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about MS and its effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand...

These are the things that I would like you to understand about me before you judge me:

Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.

Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With MS it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed, and almost assuredly we are in pain. We have good days and bad, and during our good days we may truly not "look sick", but we are.

Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what MS does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!

Please understand that MS is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.

Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.

Another statement that hurts: "You just need to push yourself more..." Obviously, MS directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. MS causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.

When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. MS fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have MS or other fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my MS at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.

When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. MS does not wait, nor does it forgive... when we say "please ... now!" it means now.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of MS the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.

In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible...

I need you to understand me.

MRIs are boring

Not much else to say, i just felt i should post because i havent in a while... been enjoying myself in sunny spain. Is it wrong that i caught up with what my friends had been up to for 2 weeks by checking my blog?? big yey for see see rider for getting p*ssed and hoorah for shop-till-you-drop for kicking carer ass!

I've been for an MRI scan this morning cos the prof just wanted to check whats going on inside my head (yeah, not alot i hear you all chorus) after my last appointment when i told him i wanted fixed. Hopefully it'll give him more info on what treatment will suit me best and what i need to do to pull me out this hole.

I think I'm gonna get my theory test done this autumn and do my driving test after christmas.... i say i think cos i'm just not sure whether i want to keep putting myself through all the heartache and disappointment. i know i have to do it..... i just cant be arsed! 2 years, 2 failed tests, 5 cancelled tests, 4 due to ill health, 1 due to a family tradgedy. Maybe it's just not meant to be! ach well nevermind, i'll write soon xx