Merry xmas, bog off!

Merry Christmas, but bog off!!

Of all the months I really couldn't be arsed to get ill it was December... and guess what!!

No matter how prepared you try and be, and when you have MS you gotta prepare, a spanner always ends up in the works. And my spanner is known as tegradol!

I was half way through my xmas shopping, doing well, no extra fatigue and no stress... when I was hit with a nice dose of trigeminal neuralgia (I think... I'm not really sure, might just be a dead bad headache). So they started me on this tegradol and I just slept for 10 days! That's 10 days taken out of valuable shopping/visiting time. Which means you end up cramming it all in together instead of pacing yourself and it just becomes a nightmare!!!!!!!

And of course you always get some idiot who turns up unannounced and thinks that seeing as you're not doing anything they can stay for hours (the unnamed perpetrator did bring After Eights... so I made them a cup of tea) not realising the knock on effects of their spontaneous arrival.

This Friday afternoon had been my designated 'rest' day where I would make my last piece of jewellery for a present, make a few cards and wrap some presents at a leisurely pace. Instead, this one hour visit zapped my energy, and gave me less time to get things that I NEEDED to do, done! Meaning I had less energy to do things in half the time, resulting in pushing myself. I then had to cancel a meeting with a friend that I'd had planned for the next day because I needed a new rest day as I was knackered! And I mean the knackered you get when you are so expended you don't have the energy to speak. I was gutted too, I was really looking forward to seeing her. :-(

Now I know, I know, I should have turned the girl on her heels when she turned up unannounced... but as many leaps and bounds as you make in 'learning to be selfish' sometimes it's really hard. You can't go through all your life being 'Miss Ice Queen Super Bitch' and on this particular occasion.... I was just too tired to tell her to eff off and come back when she had rung/texted/emailed me to arrange a suitable time for both of us (yes, I do realise not everyone can work entirely round me).

What really gets on my nips is the fact that if I had a job, or a family of course people would arrange times with me... but no, I'm unemployed, I have all the time in the world! And anything I am doing is far less important than what they do, and it can't make me feel THAT bad.... Or am I just measuring everyone else by my own standards??

Also... those prats who turn up, and when you ask how they are they sniff and say they have a cold.... WELL WHY ARE YOU BRINGING IT TO ME, YOU IDIOT? YOU KNOW I'VE BEEN ON IMMUNO SUPPRESSANTS FOR 4 YEARS, YOU'VE SEEN WHAT HAPPENS WHEN I GET A COLD, YOU KNOW HOW LONG IT EFFECTS ME FOR...... WHY???????????

*sigh* I did have a little sniffle over xmas but my immune system fought it off and it never took hold. I've never felt so proud of myself for events beyond my control... I felt like a dad taking his son to the pub for the first time, and buying his first pint.... that's ma boy!!

I do love my friends, and I do love to see people. It gets very lonely when you can't get out much, and you drop out of people's consciousness but this constant people training is exhausting. I don't do much, and it's bloody hard work not doing much, so please please help me rather than hinder me... is that really too much to ask?? Why can't people understand it??

I did drop a lot of friends who just didn't get it... I worked with the friends who wanted to get it but found it hard to understand... and leant on the friends that got it straight away. It's difficult to turn your back on people, but if people are bad for you it's the best thing to do... question is can I do it again??

Christmas wishes

Just wanted to say Merry Christmas to you all and hope 2008 is a good year for all of you!!!!!!

Hope you have lots of fun and frolics (that's frolics CC, OK?? lol).

Quick update

As some of You may be aware I've been missing for a while. Right now I'm in a really dark place & can't see the light at the end of the tunnel. Yeah, I know it's there somewhere but for the timebeing it escapes me. So as you can imagine it's been kinda hard to "show face".

Things haven't been good with me for a few months but I was coping because normally that's what I do. Put on the brave face & pretend that it's all good!!

I won't go into details because am hurting way too much right now to even bring myself to actually admit what happened but I've taken steps too put the situation right.

Anyway think am gonna leave it here coz am not really making any sense.

I hope you all have a very Merry Christmas.

Ms xxx

Me & me big gob

PSST...

I just accidentally volunteered See See Rider to model at the MS Life fashion show.... Do you think she'll mind??

Happy Christmas

I promised to write and tell you all about my holiday in November, and I didn't...sorry!

So here's a quick update on what I've been up to, before I go away again.

• the holiday in November was good - much partying, much alcohol, nice people. Excitingly, my ex was there - we had some Big Talks. He's currently seeing someone else but wants to finish with her, says he made a mistake finishing with me, yadda yadda. I've told him nothing's going to be happening while he's still with her, so if he wants to finish with her he's to get on with it. I'll be seeing him again at Christmas so he's supposed to be
  doing some hard thinking before then and I'm deciding whether I want him back anyway. Meanwhile I'm having my hair done and looking out low cut tops! I'll keep you updated, but he's a champion faffer so I suspect he won't have done anything about it.


• My brother is getting married next July, to a woman from Vietnam. She's about my age, and has a teenage daughter. He didn't buy her on the internet ;-) He goes out there for work and met her at one of the companies he works with - she's an engineer. She's very nice, and has passed the ultimate test - my mother likes her too! They're going to have two ceremonies, one in Vietnam and one here. I don't think I'll be making it to Vietnam, but I'm looking forward to the ceremony in Portsmouth. Got to start thinking about presents!


• I'm back at university which is tiring but good. I've presented a paper at a conference since going back, and submitted the chapter I was asked to write for a book. Quite the little high-flying academic I'm turning into! I'm also getting bits of consultancy to do from the faculty I'm studying with, which is cool. I was supposed to be doing some when I went off sick, so that's my Christmas holiday activity ("A review of policy and practice in end of life care" - fun, eh?)


• MS-wise the news is kind of mixed. I'm much less fatigued than I was over the summer (not that that would be hard, I was sleeping about 20 hours out of every 24) but my mobility is getting worse and worse. I'm waiting to hear if I can start on Novantrone, which would hopefully slow down the progression. Interestingly though, it would turn my wee blue! (and thanks to Shop-Till-You-Drop for pointing out how this would save on Toilet Duck ;-)

Other than that, life just goes on really...I'm off on Saturday for two weeks, over Christmas and New Year, to one of the holiday centres I go to. Hope you all have a great Chrimbo and an excellent 2008!

So tired!

Right, I've been trying to write this for a week but been sooooooooooo tiiiiiiiiiired!!

Well, my first MS Society big thing went really well. I had the Christmas party last week..... yes I know it was early but I've been organising none stop since last October, and I'm taking December and January off!

I stole Jooly's format from the 10th birthday party and had some music for some stand up fun, and wrote a quiz for some sit down fun... and a buffet .... cos I get hungry when I organise!

Everyone seemed to have a good time so I'm feeling very smug. although gutted I never had time to enjoy my own party, by the time I'd made sure everything was running smoothly, read out the quiz (god I was nervous, I hate public speaking... even if I am hilarious) and sorted the raffle out, I was exhausted so I went home lol.

And when I got home could I just flop into bed??? NO! I found 2 cats and a MASSIVE live toad on my doorstep. So here I am trying to get rid of this toad, I didn't want to open the door in case it jumped inside (it was right on the ledge) but I didn't want it jumping into the jaws of death either... but I couldn't just pick it up and take it somewhere like I would do with a mouse, cos 1. I had no idea where it came from 2. my hands were full (and I don't just mean a little bit full, I had a CD player, a bouquet of flowers, and a bag full of quiz papers and answer sheets) and 3. I was wearing 4 inch heels.

Anyway, my friend's husband got out the car to help and guided it away from the doorstep, and jumped like a girl when it jumped... like a toad, and all disasters were averted! Apart from that the poor toad was miles away from home because my lovely pussy cat thought it would make a nice present (well I do like green), cheers Bramble, I love you too xx (I know it was Bramble cos he brings live presents, where as Lily likes them dead, and often eats half... she's very selfish)

So... that's about as exciting as my life has been recently.... more posts to follow now I've started leaving the house again after my hibernation and mini depression, happens to us all eh??

Christmas!!!!!

We have all been quiet haven't we. Don't know if you're back Wednesday Addams but hope you had a nice holiday and I hope everyone else is ok.

Just a question for you all. Are you ready for Christmas? I realised the other day that we have hardly done a thing and there is less then 5 weeks to go arrrrrrrrrrggggggggghhhhhhhh. I only realised it was so near when I realised it's 2 weeks to my birthday and I know Christmas is only a couple of weeks after that. We did order a couple of bits online yesterday but still got lots to do. But I'm not gonna stress about it, I've decided that what doesn't get done doesn't get done - tough!!!!!

Another thing, for those of us in wheelchairs. Do you find the shops harder to get around this time of year? Isn't it just so annoying that they fill the aisles with, what can only be described as crap (well most of it). It's like wheelchair users don't shop at Christmas do they?? God forbid!!!!! Right that is my little rant over.

Just in case I don't get to write here again before the big day I wish everyone a very merry Christmas. Have a good time and don't eat/drink too much.

Alive again (ish)

Wow, everyone's been absent, not just me. Well, hopefully I'm sort of back. Ish. I've been having a relapse you see. Damn MS. Did I tell you I have MS? So I've been doing lots of sleeping. I'm not 100% now, but I'm better than I was...and if I wait till I'm 100% I'll be waiting the rest of my life, so I'd better get on with it!

I'm off on holiday on Saturday (cue more sleeping in preparation for party party party) - will tell you all about it when I get back!

Woohoo *sets off party popper*

You live where?

This will make you laugh.

I had a letter today from the DWP (Department of Work and Pensions) with a letter and form for me to return. Oh, what was the purpose of this important letter? What top secret personal information do they need to know next?



Dear Ms X,

We are writing to you at Your Road to ask you where you live, as we do not have an address for you. Please return this form letting us know your address.

!!

Urmm, funnily enough the address at which you wrote to me is actually where I live. Imagnie that!!


I seriously wonder how some departments run at all.

P.S. I have highlighted the part asking for my address and then made big arrow to my address saying "I've found it!!".

Under the 'Your Reply' part of form I wrote:

"My address would be the address to which you sent this letter. Just to confirm, this is my one and only address since I told you I moved last year. Does this help you in this matter?"

Back in time

We're going back, back in time...

Well, I went to physio today. Transport picks me up really early so usually I have a 30-45 minute wait. Today I spotted some 'new' magazines on the table so went in for the kill...

The cover said Home and Houses Magazine October 1985. Huh? I thought. Can't be true. It must be a spoof cover. Let's look inside. But it was all true!

For those of us who think that's not that long ago, it is 22 years ago!!!!!

Was funny reading about all the “new” gadgets of the day.

A new regnor car with - wait for it - windows that you don't have to wind up! You can push the button!

A tumble dryer that will dry your clothes 'like a gentle summers day'.

An oven with a fan that means you can open the door when cooking a soufle and it won't go down (essential, eh?).

I'm glad the craze for bright plastic bathrooms is over as well as the chinz look.

Anyway, beat that if you can!!

Ah, there you are!

Sounds like everyone has been in pretty much the same head space.

I keep thinking about the blog and feel terribly guilty for not contributing. I just have so many emotions swimming round my head, and I'm so exhausted that everytime i sit down and try and write, i just dont know where to start. And to be honest right now i just dont want to put my feelings down on paper... or screen cos i have far too many!

I haven't forgotton about the blog, and I'll be back i promise i just need to sort myself out etc

Don't forget me xx

Here I am at last!!!

Well here I am and it's about time, I know I've been gone for ages. Well it seems like it. I have been popping in from time to time but never felt like writing anything but I thought I better this time.

As you may know, most of our time over the last few weeks have been spent backwards and forwards to the vets with our cat. We originally took her in because she seemed to have a cold, coughing and sneezing. The vet gave her some anti-b's and said that she badly needed her teeth sorted out. So we give her the anti-b's and all is well until about a week after the meds have finished and she starts the coughing and sneezing again!!!!!

So we take her back and the vet gives her stronger meds but says that it could be her teeth causing it. She was also concerned as she had lost weight in the 2 weeks since she'd last seen her, so she ordered blood tests. The results came back that she has hyperthyroidism (an over active thyroid, yeah I didn't know cats got the same illnesses as humans!!) So we had to choose between surgery, meds for life or a radiotherapy treatment. We opted for the meds as she is getting on and we didn't want her to have a long op. So she now has 4 tablets to take a day (if you've ever tried giving a pill to a cat you can imagine what fun we had).

They then do more blood tests to make sure the thyroid meds are working which thankfully they are and she has gained her weight back and more but it now turns out she has a slight kidney problem which is common in older cats, so the vet who told me over the phone did a script for more tablets, but when Kieran took her back to check her teeth the vet said it could be controlled by diet. He also booked her in to have her teeth operated on. So that operation took place last Monday and she had all her back teeth pulled and her front teeth cleaned. She has healed up lovely and is eating and everything as normal. So it's now just the 2 tabs a day for the thyroid. As you can imagine she has cost us a small fortune (nearly £500 I think yikes!!) but she is worth it.

So that has been my life for the last few weeks. Sorry if this was long and boring but I really don't have much else to write about (or nothing I can think of anyway).

Understanding

I found this here.


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 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 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.

I'm still alive!

Hi everyone,
Do not adjust your sets, it actually is me! No I haven't dropped dead or been back packing in darkest Peru without Internet access! I have had a little break for a while, and been busy completing my end of year exams for Uni so no I'm back.

I decided to go out to the library today, after all my studying I can now legitimately read a non work book without feeling guilty. It was quite funny- you know how most people who work in the job centre (see posts by smokey) amaze you by being employed, well I think 3 of them have been on secondment from job centre plus!

The displays similar trates in behaviour...
1. Totally incapable at doing their job
2. Fact that might need to do more than 1 thing at once, is overwheming
3. Have to discuss with someone else how to do basic task- which form to give, which button to press on computer.
4. Speed levels are dead slow or stop
5. No shame in asking a collegue for help with basic task, while proclaim loudly 'Ive not had training for this'.
6. NO sense of time see that the 7 people waiting continue to look at watches etc, while they consult whether a juinor card is green or blue etc.
7. Use of technology is treated as if they are in control of control panel to set off world war 3.
Is it just my library or does everyone else find the same?

Well I made it out of there alive, this poor lady who was behind me was sitting waiting (whilst pulling out hair) to fax 3 pages on machine, and was now half climbing over counter to see what 2 of them were doing. I raised her my eyebrows as I left as if to say Wow your still here, good luck!
Im hoping the speed at which my fines are sent to me will be at a slower speed judging by the above performance!

Quiet, I agree.

Things have been quiet, i agree. I apologise for not being as faithful blogger as others might be. Events have happened. Don't get me wrong. I met a friend of mine for a coffee the other day, we haven't seen each other since I've started walking again. I talked and talked, even the table next to us lost interest in one another and opted to eavesdrop. Three hours later I asked my friend "so how you doing?". Those hours were filled with my stories of turning 21 and what happened on my mothers 50Th, my trip to Barcelona and the troubles i ran into, my new house and how it was fate we found each other, trying to set up my business - again! and the usual gossip about siblings, boyfriends, old workmates, and enemies. It sounds like a never ending tale i could have shared with all of you. I did want to, the countless times I would start writing and just stop mid sentence. 'what am I doing?' i thought 'people don't want to read about this, boring crap'. I know the truth is you probably do. The problem is these little juicy snippets of drama excite me only for so long until they are stored in my memory, the more they are extracted into speech they loose their colour. That is why as i sit here in my half packed up room, my days are filled with errands yet i myself strangely feel numb and dull. Like the weather. I feel no excitement nor any stress. This haze around me forces me to feel bored when i have plenty to be doing. I can't believe I am moving on Thursday, yet it has taken so long to come to this point! I simply don't know what to do with myself and i can't figure out why. .