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

Wednesday, October 31, 2007

Ah, there you are!

Candy Cane
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

Saturday, October 27, 2007

Here I am at last!!!

Naughty But Nice
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).

Friday, October 26, 2007


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!

Saturday, October 20, 2007

Quiet, I agree.

See See Rider
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. .

Friday, October 19, 2007


I too have nothing profound to say, but very aware that I have not written here for awhile, so thought I would give you an update on my life at the moment:

M.S: My MS at the moment is behavouring itself, keeping it's nasty head down and out of my way. My left leg is a bit weak but after my last relapse it has always been weaker, so not to worried about it, I can stand, walk and do "normal" things still. So all good on that front.

Job: I am still employed, my temp contract has been extended for another month (was due to expire 22/12/07 now put as 29/01/08) OMG just realised how close we really are to 2008!!! I am still enjoying my work, and still hoping it will become perminante. The people there are great, the job is not exactly rocket science, but still I enjoy it.

Love Life: Tomorrow I am going out with someone, so will report back later on that one. We have known each other for a month now, but this is the first time it will be in a social capability. We met due to work, he works in the warehouse. He is 35 (older man!) and a great laugh.

Pets: My cat is asleep to my right, fast asleep. Asleep is a luxary that he did not allow to have the night before grrrrr. He is eating well, too much, he is actually eating way to much, he will eat till he is sick. three bowls of cat food (three cats in the house and he ate all the food), in one sitting.

Up Coming Events: Going to watch the rugby tomorrow and meet this new date. Get paid on Thursday (first pay check for about a year!), got a birthday dinner on Friday. Shopping on Saturday. Sunday still not clear. Halloween party on well Halloween, and another one in the pipe line. And loads of boring council meetings.

Conclusion: I am happy, I am settled.

Tuesday, October 16, 2007

Anybody there?

Candy Cane
Oh Dear, been very quiet recently hasn't it?

I'd love to say something profound... but i'm just too tired!

Catch up with you all soon xx