Powerful words(not mine)

• I read this in a support group I belong to,I think other people might need to read it too.
  
   Having MS ...

  
  Having MS means many things change, and a lot of them are invisible. Unlike being hurt in an accident, most people do not understand even a little about MS and it's 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 still 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 bic2-4 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 000. 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 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 may 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!

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I want to believe

I forget that people read this,which is a bit stupid of me seeing as I'm the one who shares it on facebook! But I'm always surprised when someone takes the time to message me that they've liked something they've read(I want to not spell read that way,it;s the same way you spell read,which to me is stupid,surely 2 words that sound different and have different contexts should be spelt differently?Maybe I'll spell it as RED,but that looks dumb cos that's a colour,shut up Alison.You confusing everyone including yourself!) Or otherwise that something I wrote has helped them in some way.I'm amazed that people have taken the time to let me know they love the way I write and shocked that my thoughts are inspiring.
I want to believe them,I want to push past my disbelief in myself and not dismiss it as "They're just being nice" I would love to just be able to accept the compliments at face value and not devalue the words that someone took the time to write out and send me.
Why do I always find it necessary to put myself down? Why can I not believe that good things said to me are true? I think I am such a failure at life and I think I set myself up to fail.I think I do this on purpose rather than try my hardest and not succeed.At least then the reason I failed is cos I didn't try hard enough,whereas if I DO try and fail,well the only excuse I've got is that I'm just not good enough.Pretty screwed up way of thinking right there.
I want to believe in me.I want to believe the people who say positive things to me.I want to believe.I think for now,wanting to believe will have to be enough.

The tupperware party

I was invited to a Tupperware party,haven't been to one for years and with a cupboard full of unused Tupperware did I really need more? This was different though, it was being held as a fundraiser for MS,so I decided I might go.
I started to tick of the boxes of why I wouldn't go,never been there before,don't know anyone,too far away,don't know the way,how would I get there..... The list went on and on,so I started to make plans of how I COULD go.Asked Sarah if she wanted to come with me,that solved a number of problems,I have a lift and will know someone,we looked on google maps to find the way and really 15-20 minutes really isn't too far.So I was set,screw you anxiety and panic attacks,I'm going out!!!
Then Sarah realized she had another appointment at around the same time so wouldn't be able to take me but could meet me there and bring me home,okay slight panic starting to rise.So I asked my Dad if he would be able to take me, no problem.Panic dies down a bit.I'll still be walking into someones house who I've never met,but I can at least try,can't I.I mean it's a Tupperware party for goodness sakes at a ladies home who I know from an online MS support group,I'm not entering the bowels of hell( Although it IS a Tupperware party some just may consider that the gate way to hell!!) I reckon if I did an online search I could probably find someone who knows someone who cousins best friends grandmas uncles niece entered  a life of wanton debauchery after attending a Tupperware party! Hmm,wanton debauchery?This could be interesting!
So the day begins,I've woken up feeling pretty good,no symptoms going haywire just the usual run of the mill stuff that goes on. Sarah pops in to try to tame the frizz that used to be my hair(note to self,organize a hair cut) and helps me put a bit of make up on to calm the redness of my face.Having MS has make me a little vain,I tend to worry about not looking like a troglodyte when I go out now.I look okay,would be happier if i could lose 20 kilos on the drive there. Miracles happen sometimes!
Dad and I set off and he lets me know he's checked the map at least 6 times already,hmmm and I wonder where my anxiety comes from! I like these times driving with Dad it's nice spending that bit of time with him one on one,just chatting about nothing and everything,I think we've solved most of the world's problems while he's been driving me around where ever I need to go.
So we get there and find the right place,Yay! Our constant map checking and making sure we had the right address has paid off,okay now to navigate to the front door and cross the next hurdle...meeting strangers.I'm stressing out and just want to go home.but I can't Sarah is meeting me here and I can't disappear on her.
I know this all crazy and hate that I am like this,I wish I could just be like normal people and enjoy new people and different experiences but this is the way I've lived my life since the rape.This is how I made myself feel safe,how I was able to function fairly well and give off the appearance that I was not constantly terrified and about to lose the plot.I think that maybe if that man had been caught that this terror and need to be safe and in control wouldn't have lasted as long as it has but he wasn't he's still out there somewhere and every where I go without even realizing it now(it's not a conscious thought process,it's automatic) I am looking for him.He hurt me and my family in such a vile,evil way and he got away with it and is living his life as though what he did doesn't matter.I hope he rots,I hope he gets worms that eat him from the inside out,I hope he writhes in pain with no relief,I hope he never finds love or joy or peace.I hope he knows how evil he is.(Oops,sorry,off the subject a bit)
Dad leaves and I'm here on my own feeling rather foolish for the amout of anxiety I've put myself through this is a normal house with normal people.I'm the first to arrive(typical,I get everywhere too early) so I sit myself down,other people arrive and most of us are women with MS and although as a concept, I know other people have it,this is the first time I've actually met anyone else with it.And you know what,I'm not the only one in the room with a stick or a walker,I'm not the only one with tremors or speech troubles,I'm not the only one,I'm normal!! How amazing is it to not stand out,how amazing it is to fit in,how amazing it is to meet people who know what I'm talking about,who truly understand what I mean when I mention tremors or buzzing or any of the other things that MS brings. I am not alone and that is just such an overwhelmingly awesome feeling,that I really have no words to describe.
It was a really good day,I spent too much! Tupperware has changed a bit and I NEEDED the stuff I bought!!
I'm proud of myself,for getting out of my comfort zone,for facing some demons,for not letting the anxiety and panic win,for being courageous,for being afraid but being willing to face it all head on.I am proud of myself.

Keeping this thing quiet

It's been awhile since I had a bad attack,like a real bad one where they pump those vile steroids straight into your blood stream.Had a a few where I've needed oral steroids, but touch wood,nothing seriously serious for over a year(careful Alison,don't jinx it!) Mostly I've been trying to recover from the bad ones I've had and get used to all the changes in my life and body that the bad ones caused. You know I never actually realized until a few minths back that MS is always with you.By that I mean the every day symptoms,you know the tingles the numbness,the random pain spots(doctors out there listen to the people who LIVE with this shit MS DOES cause pain),the burning feet when they're cold to touch.( Yep,last night feet felt like they were on fire again,but to touch them they felt cold??) Some freaky,weird disease I've got! Anyway there's all this stuff that some time during the day will pop up,so that even on a good day there'll be some reminder that you wear the MS label.
I guess I though that you had it, took what was prescribed and then started to heal,I didn't realize that I would have ongoing problems and struggle to walk and need an old lady walker whenever I went out.I didn't understand in the beginning,that I would have symptoms all the time and those symptoms could change.No wonder I've had so much trouble accepting this,soon as I get used to one thing it changes to something else.How is a bossy, control freak supposed to live with something that refuses to be bossed or controlled? and tries to boss ME around and control me?
I have to try to keep it quiet,I have to live my life in a way that doesn't rattle it's cage to much,I try to eat right(big fail on that one) I hardly ever drink alcohol(don't have too much trouble there,I'm not a big drinker,unless someone mixes margeritas!) I take a lot of vitamin and mineral supplements. I try to make sure I get enough rest and I have the Tysabri infusion every 4 weeks.
So far it seems to be all working,every day I'm getting a tiny bit stronger and less wobbly on my feet,I can walk a little bit further with out support( don't think I'm up for a marathon or even walking to the letter box yet!) But I am getting better and a lot more settled.I don't have the rage inside me that I once did,I seem to be calmer with myself and less agitated all the time.I;m not as frustrated with myself when I can;t do something and need to ask for help.
I just hope it all keeps working,another bad attack will do my head in big time,that's the biggest problem for me.Not so much what it does to my body but what it does to my emotions,what it does to my thoughts and feelings.That's what I fear most.

Simple pleasures

This morning I had a shower,not just any shower but a shower standing up,on my own!(Sorry for the visual of a an overweight,middle aged woman in the shower) It was amazing! Yes,I have showered prior to this but that was sitting down on the shower chair,and it was good but for some reason standing up,it feels so much better.
It's another one of those little things that you take for granted,until you need help for it,then when you can do it again it's just so awesome.
Never would have thought that having a shower would be worth talking about! Guess it beats me having my usual moan fest.:o)
I read over past posts yesterday Far out!! I moan a lot!! Whatever possessed me to start something that revealed what a miserable cow I am? Honestly Alison are you for real? Why the hell are you sharing with people you don't know what a grumpy whiney negative person you are,this is stuff I don't talk about to the people closest to me,why am I letting people who don't know me have access to it? This MS sure has addled my brain!!

Maybes

"You come to a realization that 'this is who I am, this is my life, and I've got to make the best out of it.' I don't think people are giving up; I think people are moving on to live their lives. They're tired of waiting. We are refocusing on life, because you can't just sit around and wait." —Alan T. Brown, in an article about redefining "cured" featured in "The Daily Beast"
I read this quote this morning and it helped me understand my "stuckness" a bit. When I first hit that wall I panicked a bit how the hell was I supposed to move on now?I had this massive obstacle in front of me with no idea how to overcome it. Maybe I just need to refocus,maybe this stuckness is part of acceptance,maybe I'm not meant to move on yet,maybe I just need to sit and let the realization,that this is my life sink into my bones.Maybe just sitting here is not giving up but quietly accepting the massive changes my life has taken.
I think I do need to sit and wait for a while,just while I allow myself to fully accept my life now,I think when I fully do that,then I will find a way over,around or through the wall. 

Take it easy

I've been doing a lot the last few days,cleaning,cooking,going out.I haven't been sleeping well so yesterday I thought it would be a good idea not to sleep during the day so I'd be really tired at night and hopefully sleep instead of thinking.
Anyway,I pushed myself a bit too hard I think and suffered for it,last night was strange,went to get up from the table and couldn't.This has happened before,so I just wait it out 'til my legs decide to work and then try again.After about 5 minutes I got up and started to speak to my son and was having a lot of trouble getting the words out,I could see the words clearly in my head but they came out all jumbled and stuttery,this has happened before and we've got pretty good at charades and ESP!!! Somehow he's become very good at knowing what I need,I stopped trying to speak and took a few deep breaths to try to control it.This has always worked before,when I went to speak again,nothing would come out.As hard as I tried I couldn't talk at all,scared the hell out of me. Only lasted a few minuts but it really unsettled me.
I did sleep for about 6 hours straight last night and woke up this morning with no speech problems but the pain in my eye is back,I think I need to be a bit easier on myself and stop trying to do so much. The chocolate mousse tart with the pecan and almond base I made was awesome though!
I need to be kind to myself and stop trying to prove to myself that I'm okay.Well I am okay,but I need to accept my limitations and not try to push beyond them to prove that I still have value as a person.
I do have value,just because I am alive,I am worthwhile,I just wish I could believe it.