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

These legs...

Are made for walking, and that's just what they'll do, one of these days these legs are gonna walk all over you...

Hi all..

It seems it's been a while for everyone to post a blog entry.

I think we're all too obsessed about the weather at the moment.

The last time you heard from me I was ready to run over a certain GP for crushing my latest dream and inspiration for my new found faith. From there I spiralled downwards to the bottomless pit we all know as depression.

Things didn't make sense to me anymore, I didn't know what my plan was, or how to feel. Confusing everyone around me with my baffling behaviour, as usually I think I'm pretty good at acting normal. Suddenly I was very obviously ill.

I was looking forward to the long-planned weekend away in the countryside with an old friend who was in similar distress. Brilliant, we can emit our sour odours to each other and swap heavy shoulders.

But something happened out there, my senses were cleared, clean clear air filled my lungs and all I could see was green, wide open spaces, and the only buildings present were pleasant to the eye and probably more pleasant to be in.

Now, this is what I wanted. I realised that in order to be happy I need to change my situation, physically put myself somewhere where I will be happy.

So I've been working on it. Slowly, I crawled out of my chair and pushed myself to walk on my crutches. My physiotherapist then made me swap them for something I can't lean on, so I had two very tall sticks. These were so cumbersome I couldn't be bothered and opted for my old trusty walking stick. During this time my income support had come through (finally, after 8 months!) and for once I had some money in my account that didn't come from a member of my family.

I walked so much as I loved being out of the house and having the freedom to roam free.

So last week I ditched the stick, my third leg was finally left behind and put to rest leaning behind my door.

I put on some nice clothes for the first time, got on the tube for the first time, and went to town for the first time in about 9 months. Then I had my first drink and got absolutely pissed!! Yes yes, I know, pissed on one measly glass of wine. In my own defence, I didn't have any lunch.

So here's a toast to (as Smokey said) taming the beast!

This weekend I am going to a wedding, I've made my own dress, I'm going to wear my high heels and I'm going to be fabulous! I am also going flat hunting.

So who knows where I'll be next week, hopefully a step closer to being happier than I am now!

More stupid carers

For those of you who read my last post on my lovely new carer, you'll be sad to hear that there hasn't been much improvement. In fact she has grown on me in poor amusement factor alone.

Her gem of this week was asking me in a patronising tone "Do you have a boyfriend?" Urm, no, not right now.

"Oh you should get yourself a lovely disabled boyfriend."

I suppose he has to be disabled I mean who else would want to go out with me?!

Then, as if to elaborate the point, she adds "I know this LOVELY disabled couple..." and she goes on in detail about their personal disabilities (Firstly, I don't want to know! Secondly, that stuff should be private with the agency).

Then she says, "Oh, but I don't know how they have SEX!"

Just when I'm about to point out that I'm sure they manage just fine she starts pulling yucky faces and making 'tut tut urghgh' noises!!

Amazing to think this is a women who's is working in the so called 'caring profession'. And the sad thing is she has no idea that what she says is inappropriate in the least.

It was her last day on Friday and I was wondering with what marvellous upbeat message she would leave me. Instead she patted me on arm saying "Aww I don't like to think of you here being on your own, you poor thing... awwwwww".

This is as I'm waving her out of the door - locking it behind her!!

Anyway, I've got a new person starting this week- can't be any worse... surely?

Badminton

... and shuttlecocks

I've never been able to decide if love is necessity or science. But either way it's nothing special. I've dressed for the part. Played the character. Not that it wasn't genuine. Just that I felt obligated to condition.

Its strange how instead of healing me, it only made me worse.

But as with any drug, I still wanted more of it.

There are rehabs for every kind of chemical dependence. Yet no one questions our health when we're addicted to flesh. Or someone's indifference to our affection.

They warn us about heroin and cocaine. And even drugs as tame as pot. But there are no warnings about the dangers of love. There are no rehabs for rejected lovers. No drug to simulate the punch of the first kiss.

I don't mind being alone. I'd just like a choice sometimes. Between everything and nothing.

Smokey xXx


P.S. My MS is good, so got nothing to report on that front, for now the beast is tamed!!!

Carers

I think shop-till-you-drop and I should form an Irritating Carers Support Group. Not had anything as extreme as her recent problems - but today I had Mrs Patronising. You know the type - feet together, clasp hands, lean forward from waist, talk LOUDLY in one syllable words, chortle in patronising way at anything I say that indicates I might actually be a member of the human race.

"I was at the shops yesterday"

"Oh you were AT THE SHOPS? Did you buy anything NICE? *chortle chortle*"

"No it was mostly just things like paying bills"

"Oh *chortle chortle* you PAID your BILLS, that was GOOD"

*suppresses urge to rip her arm off and beat her to death with soggy end*

Zzzzzz

Sorry I've not been blogging much recently. It's because I've been asleep most of the time, and my sleepwalking doesn't run to sleeptyping yet...sorry...will practise...zzzzzz

(Silly MS)

SCA Faire

The SCA Faire went well, I met my Ex there, and erm one thing lead to another and we are now back in contact with one another, and going to give this friendship lark a go.

I can't get him out of my head, so perhaps this is the better way of doing things, no contact for a month and still my feelings are strong. And by his reaction on Sunday it must be something close ot it for him too. I am not expecting more than friendship, that would be daft, but I hope it will bring some closure.

The cats are all asleep and I have a stinking cold, so I am going to go and join the cats.

All the best

Jobs

Hi all,

Sorry been so long since I have written. Just had nothing much to say, and haven't been online as much as I usually am.

I have had two colds since I last wrote in here. Been dumped and erm ... applied for jobs, had job interviews and got turned down for jobs after jobs.

I had a family BBQ today, to celebrate my birthday, it was a day early cause my father is going away tomorrow, so it kinda made sense. It went well, had some tasty yum-yums, which I ate a smidgen of, my throat is very sore so struggling to eat, but it is getting better I think.

Tomorrow I am going to an SCA Fair. I will try to let you know how that goes when I find out myself. It should be good.

Have a fantastic weekend. Be good and take care of yourselves.

All the best

Got hot

Hi all, hope you are all feeling fine and if it has got hot where you are hope the heat isn't draining you too much. Yesterday we had to go and run some errands and after a few hours in the car I was completely flaked out (and we have air conditioning!!!). Thankfully it has cooled down a little today so it's much more bearable.

Well got my UTI sorted. It seems the 3 days worth of anti-b's I got given was enough to knock it on the head, so thats good. And I was fit and well and rearing to go at the Prince concert. I had a really great time and he was absolutely fabulous!!! I think it's the best Prince concert we've been too and we have been to quite a few. Anyway I won't go on about it here as I know he isn't everyone's cup of tea (eh Candy Cane?? lol). All I can say is roll on next Tuesday!!!

I joined facebook a couple of days ago, no idea what I'm doing but found a few people I know on there, I really think I am going back to my teenage years, what with a myspace page and now a facebook one lol. Oh well I am sure it will keep me entertained for a little while.

Agencies

Hi All,
Being a while, cross between being busy and being very yuck. Still, had a few days of nice sunshine so the world seems a brighter place!

Bit of a moan today about the agency who do my care. My regular lady is lovely, does what she's supposed to do and generally doesn't do my head in too much. But she's off on holiday for 4 weeks (off to marry some distant relative abroad).

So the agency sent me a NEW person. NP. Looked promising. She arrived on time at 10am.

First thing she says to me is "Hope you've not got a lot for me to do. I'm really tired!" How's that for a promising start? Went downhill after that!! She took 25min to change my bed, even I could have done it in that time (ok, I would have to spend the rest of the day in bed but...). She claimed "I can't do quilts". Huh? Presume you do your own , never mind it's part of your job!

Asked her to hoover my tiny flat's living room. She huffed and she puffed (she didn't blow the house down but it would have made a good story).

Was going to get her to mop but I'd had enough of her attitude so she left. Then I checked the book and even though she got off 25mins early she's claiming she did the full 1.5 hours. Despite managing to ignore lots of things that needed doing, and on a go-slow .

Grrrrrrr... I hate it when I have to motivate people to do things. Lucky me, I think I'm stuck with her for the next 4 weeks. But if she's going to claim my time then I'm going to have to make her work, even if she's moaning and groaning.

Don't understand why some people do this job if they're going to grumble?

My flat not that an unpleasant place to be. It's not an out of 'How clean is your house?' hellish environment. Oh well, I'm going to have to put my foot down. Shame that you have to be like that with support people who are supposed to make your life easier!

Hospital visit

Well...talk about two neurologists, three opinions!

First off, he doesn't think I'm suitable for disease modifiers, as I'm not having "typical" relapses (trust me to be awkward, eh?) He thinks there's a possibility I might be helped by Mitoxantrone (Novantrone) - the drug you'll hear some people referring to as "chemo". It's a cancer chemotherapy drug which you get through a drip once every month or every three months.

The idea is that it calms down the immune system and stops further damage to the myelin. It does have risks though, including potential heart problems. He didn't sound that wild about my suitability for it, but he suggested I went off and read up about it, then came back in four months and saw him again.

In the meantime he's going to get some extra information from my existing neuro...because guess what...he's not convinced I even have MS!

*hits head against wall

To jab or not to jab?

I have a hospital appointment tomorrow - to see about possibly going on disease modifiers (Avonex, Betaferon, that sort of stuff). Not really sure what I want the result to be. On the one hand it would be good if the doctor says yes, you're suitable, off you go - hopefully they would work for me and reduce the progression. On the other hand, it would also be quite nice if he said sorry you're not suitable - I wouldn't have to face a future of injecting myself on a regular basis! I know I'd get used to it if I had to...can't say I'm thrilled at the prospect though!

Will keep you updated on developments...