The Return of the List

Good Morning Bleeps.

I was thinking yesterday how we forget things. Not just those of us that have cognitive issues and therefore the memory of Dori ( from the Disney movie Finding Nemo) but as Human Beings in general. What do I mean by that? Well, if it wasn't for the ability to forget then I think the world would probably be full of "only children". Let's face it, labour bloody hurts and childbirth isn't something to be taken lightly but yet a lot of us go for a second (or in my case and third and fourth) child.

I remember when I was having my second daughter, Kassidy (now a beautiful 18 year old), my waters broke in the middle of the night and I excitedly toddled off to the hospital. As soon as my first contraction hit it all came flooding back to me and I remember thinking "oh crap, I remember how much this hurts now." Thankfully it was a relatively easy delivery (drug free) and I cherish the memory of that day.

When everything settles down and you get on with your life then the really tough stuff sort of fades into the recesses of your mind. You stop focusing on them because, quite frankly, you don't have to any more. For example, at the moment I am sitting here writing with a tightness around my throat. It feels like a pressure around my windpipe. I used to hate this symptom because it makes me feel like I am being strangled and it panics me slightly. It is usually accompanied with the inability to get enough air into my lungs and as hard as I try, I feel like I can't breathe. It feels like a tight band around my middle.

It occurred to me yesterday that I had forgotten a lot of what happened to me when my symptoms were rampant during the first third of this year. The one thing that has come back to me, that I hadn't even realised had gone, is my list.

I call it my stock list. I wake up and immediately take stock of what is happening in my body. For the first time in MONTHS yesterday I got the electric shock type zingers as I got out of bed and so today I gingerly lowered my feet to the floor and stood up slowly. I used to do this every morning but I had stopped (as the zingers had gone away). Sure enough, the old electric zaps travelled up through the soles of my feet into my legs. I then got my old list out (in my head), blew off the dust and went down it. Hello old friend, it's been a while.

Zingers in my feet. Check.
Arms and fingers tingling. Check.
Legs heavy like full of wet sand. Check.
Left side of my face numb but tingly at the same time. Check.
Pressure in my head. Check.
Blood feels like ice water. Check.
Disoriented / dizzy. Check.

What really stinks is that my real life "to do" list is getting longer and longer as I don't have the energy or focus at the moment that I should have. I am determined to focus today and get a lot of work done. I won't give in to this illness, not today, not ever. I am hoping to put that symptom check list back in its box very, very soon.

So enough about me, how are YOU?

MS Girl

Good Morning Bleeps.

I am sitting her watching Morning TV and Miss Piggy and Kermit are being interviewed. I have always LOVED Miss Piggy and her sassy attitude, I actually can't wait to see the new movie when it comes out. I guess some of us never grow up.

So anyhoo, Muppets aside today I come to you with a mixed bag of feelings but I am going to try to focus on the positive as much as I can otherwise those of you that don't know me personally will start to think I am a right old miserable bag (those of you that are close friends or family already know this as a fact but it is nice to keep up somewhat of a front, right?).

As you know from yesterday's blog (what do you mean you didn't read it? Flipping liberty, go read it now!) you will know that I woke up with a toothache. A couple of extra strong pain killers later and I felt OK. Actually I felt better than OK, I felt good.

I took my shower and waited for the exhaustion that this simple task usually sparks but nope, nothing. I felt the same post-shower as I did pre-shower. Hmmm. I got dressed, applied make-up and even dried my hair, all in ONE go. Still, no bone-crushing fatigue. Odd.

I came downstairs and it suddenly dawned on me that for the first time in a long time I felt like my old self ("old" self as in "young and lovely" self of course). I almost didn't know what to do or how to feel about this sudden change in events, so I decided to clean. I cleaned the house from top to bottom and bearing in mind that we live in a four storey town house, this is no small thing! I vaccuumed the carpets (stairs and all), cleaned the kitchen, mopped floors, did laundry, cleaned bathrooms, took out the rubbish (garbage) and dusted/polished surfaces. After all that, I still had energy.

I went on to cook a roast pork dinner and when I finally sat down to relax with a glass of wine and Phil, I still felt fine. I was tired but I was normal person tired. I was facebooking with my lovely friend Jenni, a fellow MSer, and I excitedly told her about my day and that I was feeling normal person tired and she totally got it. I am sure she won't mind me telling you that she felt a similar feeling of happiness when she was able to iron her clothes, she said she told everyone. Maybe non MSers will find this hard to understand but when you usually get exhausted from simple, everyday tasks it is a big deal when you get a glimpse of your former self. For me, it was exciting and it gave me hope that I will get more days like that.

My day was made even better last night when I got a text from a very close family member to say that his cancer is still in remission, another big deal since he was only given six months to live when he was diagnosed nine years ago. I am SO thankful for the trial drug that they offered him way back then and his positive attitude that has helped him keep the evil that is CML away.

When I went to bed my symptoms decided to come back with a vengeance. My legs were heavy, I was having electric shocks in my tongue (a new sensation that was making me jump out of my skin) as well as the ice-cube in my brain, which I hate, hence the mixed bag that I mentioned at the beginning. Having said that I told myself to be happy and grateful for the respite that I had during the day, to celebrate the good and to not focus on the negative.

So, all in all yesterday was a good day. May there be many, MANY more not just for me but for all of you too.

So enough about me, how are YOU?

How Many Spoons Do You Have Today?

Good Morning Bleeps.

It is freezing here in the South East of England today. I am snuggled in my fluffy white robe on the sofa (not like me, is it?) and I just can't warm up. It's times like this I wish I had some thermals. I have woken up with "heavy as a hippo" legs again today. Actually I had them in the middle of the night too, I lay there in bed with legs so heavy that they felt like they would go through the mattress. Those invisible aliens sitting on me again, cheeky gits!

Actually what woke me up in the middle of the night was the fact that the bedroom was like the Antarctic.  You see my sister, Diane, told me about a Dr. Oz who was on a US morning talk show speaking about how to help insomnia. One of the tips was to have the bedroom cold and so I decided to open all of the windows. The thing is, it dropped below freezing and since we overlook the sea it got bitterly cold in the bedroom. Not even snuggling under the duvet was enough to keep warm but it was too cold outside the covers that I couldn't face getting out of bed to close the windows (come on, most us have been there, don't judge). It is safe to say I wasn't very popular with Phil, in fact his exact words this morning were something along the lines of "It's bloody freezing in here, I hate you". A bit harsh, ha ha!

So I am sitting here with my second cup of coffee of the morning trying to warm up and also trying to ignore my dizzy head and left eye pain. After my freaky episode last week of going blind I get nervous when my eye starts to go funky now. I really hope that was a one off but every time it starts to feel weird, I get nervous.

Anyway enough about what ails me today, I wanted to share something with you that I read yesterday. One of the most useful websites that I have found since being diagnosed (well, actually it helped me to recognise some symptoms before my diagnosis) is the MSRC (Multiple Sclerosis Resource Centre). I follow them on Twitter and Facebook (blimey, I sound like a stalker now) and yesterday they Tweeted a link to a story called The Spoon Theory. I decided to check it out.

The Spoon Theory, written by Christine Miserandino, is a great way to explain to someone what it is like living with an invisible illness. It is written so beautifully and to summarise, Christine talks about going out to dinner with a friend who asks what it is like having Lupus, another chronic illness. She explains it to her friend by having her collect all the spoons on the table. Each spoon represents a unit of energy that people with a chronic illness start the day with. She then goes on to talk through a typical day and has her friend hand over a spoon for each task, from getting out of bed to choosing what to wear. By the end of the hypothetical day she is left with only one spoon but has yet to eat. If she uses that spoon to cook dinner she doesn't have a spoon left to wash dishes or do anything else that evening and if she uses it to go out to eat she might not have a spoon left to get home.

I thought it was a lovely way to try to explain it to someone who doesn't have to think about what they can or can't do on a day-to-day basis. I am sure a lot of MSers will already be familiar with it but if not check it out, it really hit home for me.

This morning I don't have as many spoons as I would like but I am feeling quite positive. Sure, I could feel better physically but I could also feel worse (hey Universe, that wasn't a challenge). I was supposed to see a friend today but had to cancel as I simply don't have enough spoons. She also has a chronic illness and so she totally understood, which is lovely because sometimes you feel like you are making excuses when you have to cancel plans. It is nice to know she doesn't think that and that she really "gets" it although it sucks that she gets it because I hate that she struggles with her illness (Sjogren Syndrome).

Before I leave you today I just wanted to thank a reader called Ems, who made my day with her lovely comment yesterday.  She wrote that "It is so great to hear someone else express so well how MS feels on a day-to-day basis. Although you think you are being negative you are actually being a real help to people like me who need to know others are going through the same things." Thank you Ems, that comment actually brought tears to my eyes.

Sometimes I sit here blogging away and thinking to myself "Bloody hell Karen, you sound like a miserable cow again" and so it is nice to know that sometimes people can relate, it means a lot!

So enough about me, how are YOU?