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?

Bleeping Fatigue

Morning Bleeps. Bleeps? Peeps that blog, like it?

If you have come here today hoping to be lifted up with a silly anecdote or embarrassing story then sadly I am letting you down because I am feeling totally hacked off.

I am so tired and yet I have slept through the night four nights in a row, a minor miracle for this insomniac. I should be refreshed, with a spring in my step but it would seem that my "get up and go" got up and went. What is left behind is someone that resembles a hot mess in a bathrobe, sitting on the sofa trying to build up enough oomph to shower ... again.  This is getting OLD!

I have some design work to do today, which is good as business sucks right now. I love running my own business and being able to work from home but the downside right now is that the economy has hit hard. The first thing people seem to cut back on is advertising, brochures and websites (I get that rent needs to be paid but you also have to advertise and keep trying to get business people!) and so it makes it so hard to survive right now. The end result is a seriously overdrawn bank account and no apparent light at the end of the tunnel.

The problem is that I literally do not have the energy to be as pro-active as I need to be. It is making me nervous because the reality is that I need to figure out how I balance feeling like crap every day with getting new clients and keeping my business afloat. How do people with MS run marathons when I don't have the energy to run to the front door when the postman comes?

Thankfully I have my loyal clients who are amazing and are totally supportive and I appreciate them so much. It isn't working with existing clients that I am struggling with, it is trying to get "out there" and gain new accounts that I can't handle right now. I have no "fight" in me and it is a competitive market, I need to fight for new clients.

I'd like to digress here for a second to tell you something that happened with a client yesterday. This lovely client sent me an email asking if I got her web updates done from the day before. I replied that I did it right away when she emailed me (I'm good like that ha ha), had she refreshed her computer? I felt really bad when she replied that she had been expecting my usual "all done" email. Bloody cognitive issues I thought to myself, I was sure I had emailed her. I apologised for my brain fog.

Luckily she knows about my MS and she was totally understanding, as she always is. About an hour later I was looking through my sent emails looking for something else when I came across the email that sure enough, I had sent the day before. I forwarded it to her, saying that I thought I was going mad but relieved to know I hadn't imagined sending the email. She hadn't received it and apologised for making me feel like I was going crazy, she then asked if she "made tomorrows blog". So here you are Victoria, you made it and for the record I appreciate your business and your support.

I am drinking cup after cup of coffee to the point where I feel like if I was to cut myself open it would be coffee that came out of my veins instead of blood and yet I am not at feeling "caffeinated" enough to deal with my day. I think this is one of the hardest things to deal with, the mind-numbing, body-crushing fatigue.

When you try to explain MS fatigue to a non MSer you get the "oh yes, I get tired too" sort of response. This is literally debilitating. I know I have talked about it before and no doubt I will talk about it again because it is so hard to explain. This isn't just tired, I literally feel like I want to curl into a ball and not move. Blinking takes effort today. My body feels heavy, like it is being weighed down by an invisible force.

Anyhooo Bleeps, that's me for today, cheery cow aren't I? I am broke, fed up and have no energy to do anything about it. For the first time in years I have no holidays booked and no money to make plans for one (anyone that knows me will tell you how much my drunken, karaoke breaks mean to me). To add insult to injury, I am sitting here and my knees are throbbing and feel crazy hot from inside.  Who the heck has throbbing, burning knee caps? Sod off MS, I am not in the mood for you today.

So enough about me, how are YOU?

It Wasn't a Drive, Drive!

Good morning friends.

I would like to share a funny story with you today, something that I did that I probably won't live down for a while. Even when you can attribute something silly that you do to something serious like MS it can still be ammunition for the family (and in this case, your man) to take the Mickey out of you. This is definitely one of those times.

On Saturday, Phil and I didn't really have any plans and we had a "kid free" day so we wanted to do something to get us out of the house for a while. Since he isn't originally from our lovely, little seaside town (he moved down this way after we met) there are still a lot of local villages and towns that we haven't explored together.

We decided to visit one of them as I had heard it was very quaint and neither one of us had been there. Well, it was a little disappointing (apart from a lovely little tea room where we stuffed our faces) and not much to look at so after an hour or so we got back in the car and started to drive, not really knowing where we were heading to.

I was having a good day (dizzy-wise) so I was in the driving seat and as I was driving along I jokingly asked Phil if the fact that we were "out for a drive" made us officially OLD now. Only old people "go for a drive" I said. He replied with "We are out for a drive, but not a drive drive".

Now I don't know if you guys are familiar with one of my favourite comedians but I started cracking up laughing at this point because I was instantly reminded of Micky Flanagan's stand-up routine of "Out out".

We were out for a drive, but not a drive drive. Ha ha! If you don't know Micky (shock, horror - how could you not?!) then take a minute (OK, just over 2 mins) to enjoy his genius!




Anyway, we were driving along and I asked Phil where he would like to go. He replied that he didn't know the area and so I suggested another little quaint seaside town (Whitstable) that I have been to and is really nice with cosy pubs and cute shops.

Off we went.

When I turned off at an exit, Phil asked where we were going (apparently he had just seen a sign saying it was 9 miles to go) and I replied I was taking him the "scenic route". Since he doesn't know the area that well he had no reason to ask for any more details.

We drove through country lanes for quite a while and then Phil realised that he was on familiar territory, roads that he recognised. It was at that time he asked "so how far to that place we are going?"

I looked at him all confused, "what place?" I asked.

"The place that begins with w"? at this point he looked at me like I had completely lost my marbles.

"What do you mean?" I replied

He looked at me for a second and asked "where are we going?"

"Home" I replied (at this point I was wondering why he was looking at me like he wanted to call the men with the white jackets).

"So, I guess we are not going to that seaside town that you told me about with the pubs and shops?" He asked.

OH. MY. GOODNESS!

I had completely forgotten where we were going. I had for some reason just started driving home, completely not realising that even though it was my suggestion, I had forgotten that we were on our way to Whitstable.

I started cracking up laughing but inside I was thinking "oh crap". I joked that I need to maybe start putting post-it notes in the car to remind myself where I am supposed to be going. How do you just forget where you are going? Especially when it's your own idea, you are en route and you are the driver?

Phil has since joked that he doesn't have to worry about me ending up going out and getting lost because I am like a homing pigeon and I will probably just keep driving home.

So enough about me, how are YOU?

Time To Get Busy

Morning friends.

I have woken up today with one thing on my mind, getting my accounts up-to-date so that I can get all of my paperwork over to my accountant. I have been procrastinating and now I have a mountain to climb to get it all done so that my tax return can be filed in time. I have been ignoring his phone calls and it is getting slightly embarrassing now. The problem is that I can't remember exactly what he asked me for, you see we spoke on the phone before I started using Post-It notes. Got to love these cognitive issues eh?

I have been so tired and fed up with feeling rubbish that really I have been putting off a lot of things lately. That leads to me laying there in the middle of the night with my usual insomnia, worried and getting knots in my stomach thinking of everything I have to do. They say stress is bad for MS and I am not really helping myself by putting jobs off and letting them build up. I know this but I just haven't figured out how to deal with it better.

I suppose one of the "tricks" I am going to have to learn is how to juggle what needs to be done every day (both from a personal point of view and business) with managing how I am feeling both physically and  emotionally.

How do other MSers do this? How do they get up every day and go to work, look after their families and get on with it? Is there a class I can go to? Can they send me some tips please?

I wonder if I had medication for the fatigue, would I have energy to get motivated every day? What if I could get a full night of sleep, would that help?

Also, I wonder how many MSers do a symptoms "check list" when they wake up like I do? Am I dizzy today? No? Cool! Oh wait, there is pressure in my head, is the ice-cube still in my brain? Yup, bloody thing hasn't "melted" yet, bummer! Can I feel my face? No but my lips aren't tingling and I can feel my tongue. Hey, every cloud!

Maybe this is a mental game to learn too. Do you ever stop doing a "check list", does this become the new "normal"?

I see a LOT of coffee being consumed today because I don't think Mr. Tax Man will be as understanding of my condition as my friends and family have been and so I must get done what needs to be done today, regardless of how my head feels.

So enough about me, how are YOU?

Sausages? Again?

For as long as I can remember (no pun intended) my girls (ahem, Madeleine) have been teasing me whenever an advert or news report comes on the television or radio about Dementia or anything relating to memory loss.  Of course there is nothing slightly amusing about Dementia but my children would take great pleasure in teasing me about being so forgetful.

My short term memory has been completely shot for quite a while and I was secretly quite concerned about how much I was forgetting.  I would tell the same story over again or ask my kids to do something and be met with a reply of "Yes Mum, you already asked us that".  I honestly could not remember.  My brain seemed to be working on a permanent "go slow".

Since being diagnosed the penny has dropped WHY I was having trouble concentrating and remembering to do simple things. This has progressed lately to having trouble finding a simple word to fit into a sentence.  I will literally be mid-sentence and then BAM then next word is completely gone.  I am not talking about trying to find a word that one would need a degree in English Language, I mean a simple word that is just suddenly "gone" from the tip of my tongue.  I am then rendered speechless until the person to whom I am speaking jumps to my aid or the word comes back to me (usually after a few "oh what is that word" type comments).

According to the Multiple Sclerosis Resource Centre this can be attributed to "decreased speed on information processing. Thought processes of the brain are interconnected to the conscious areas of the brain via myelinated nerves."  Of course my body is attacking the myelin around my nerves (gee, thanks body) and so it does at least explains why I am so scatty and have attention span of a goldfish lately.

It is like my brain is in "safe mode" and can only think of one thing at a time so what I have started to do is jot things down on post-it notes.  My lovely other half, Phil, went out and bought a calendar to hang on the wall so that all Doctor appointments, school dates and anything else that we are committed to can be written down and (hopefully) not forgotten.

Now I am thinking that maybe I need to note down what I cook for dinners too because last night I decided to make one of my favourite "winter warmer" comfort meals of sausage, beans and mash. When she got home from school my youngest asked what was for dinner and when I told her I fully expected a positive response. Instead got a disappointed "but we just had that a couple of days ago".

We did????  I honestly didn't remember and thought we hadn't had it since before Christmas. Now this might seem like a trivial thing to most people but honestly I was sitting there racking my brain and I still could not think of when we had that meal.  Once the girls explained what day it was (reminding me that their step sister was here) then it finally fell into place but it still wasn't a vivid memory, more like remembering a dream rather than an actual event.

So if you talk to me and tell me something that I forget, of if it feels like I am not 100% "in the room" or concentrating, at least you know it isn't personal.  It's my slow brain.

I think I am going to need a bigger calendar!

So enough about me, how are YOU?
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