The Disorder Has a Name

Last week I wrote a post admitting that due to illness I had not written a word all week. Unfortunately, due to the same reason, the situation remains the same and no more words have been written. However, I am feeling slightly better now and there will be a short time tomorrow when I’ll be home alone so I plan to remedy my two wordless weeks then.

Readers who visit here often will know I have a blood disorder. Today, I learned exactly what that disorder is. It is called Essential Thrombocytosis. I’ve had the disorder for some months now and I think it strange that I only now find out the name of it and what it is. In fact, the circumstances behind this happening is complex (which I’m not going to share) but a young, inexperienced doctor has given me more information in the past two days than a seasoned specialist has shared with me in five years.

Anyway, I’m over that side of things. Let’s move on.

Essential Thrombocytosis is a rare chronic blood disorder caused by an over-production of platelets by a certain dysfunctional bone marrow cell. I believe the medication used to treat the disorder puts the patient at risk of contracting leukeamia after long-term use. Due to this, the patient must be strictly monitored to ensure red blood levels do not drop too severely. Of course, side affects are also a worry.

My immune system has been thrown off balance and the last two weeks has seen me trying to fight two infections and it looks as if I can look forward to battling the flu in the near future (next few days). This doesn’t account for all the illnesses I’ve endured in the last 10 days, but as I’m starting to feel much improved I can push the memory of those other things aside and hope they don’t return any time this century!

The difference between today and yesterday is enormous. Yes, I do feel a little better, but the biggest relief came from being told two words – Essential Thrombocytosis. Just knowing the name of what I have has taken some of the strain away. Now I know what it is, I know what it can do and I know what needs to be done. Yesterday, I knew none of these things…and it was stressful. Today, I can start preparing a battle plan to start getting better.

Health: The Ups and the Downs

Sometimes I laugh at my own wit. Not often, mind you, because I’m told my sense of humour is sick – and that doesn’t mean great and wonderful, it means the old fashion “sick” (totally rotten). But I think the people who say that are all weird in the head.

Anyway, let me get back on track. Today, I want to talk about health — my health, in particular — and the wonderful (sometimes misguided) science of medication.

Three months ago, I felt fine. A bit tired maybe and I had a few headaches, but nothing I couldn’t cope with. Then I had a niggling feeling in what looked like a scratch on my face, so I went to the doctor. It’s been all downhill from there.

I had to have a biopsy done on that scratch, which turned out to be a skin cancer. Better out than in, as they say. Now I have a lovely scar under my eye but at my stage of life, I don’t care about that.

When I visited the doctor, after a brief whack over the knuckles for not following up on a blood disorder I have, he ordered me to have a ton of blood taken and tested. So then I had a scar on my face (at that time it was a black eye too) and a huge bruise on my arm where they took the blood. No problem. I’m passed being chosen for Ms World, so what does it matter?

The results were not good, so the doctor sent me to a specialist. The specialist also gave me a whack over the knuckles and then told me to have more tests. One of them was a bone marrow test. Still no problem. Black eye and scar on my face, large yellowing bruise on my arm and now a hole in my back followed by a reaction to the dressing which left a messy rash there too (which is still clearing up).

Still not satisfied, the specialist puts me on medication. Now, I know it was necessary. I’m in a high danger zone for a stroke. I’m having the warning signs on a daily basis. Medication is necessary. I know that. But…

The medication makes me drowsy.

Great, I think to myself. I’ll take it at night and will sleep better, which in turn will make me feel better.

Wrong!

Correction, the medication makes me drowsy for two hours and then I’m wide awake staring at the ceiling for the rest of the night. Let’s do the math. I go to bed at 9.30pm because I have to get up so early in the morning. I sleep for two hours, which means I wake up at 11.30pm and remain awake for the rest of the night.

Not good.

I continued on with my life. Getting up and going to work, even though I’d only had two hours sleep. This was fine to begin with but sleep deprivation has a way of playing with the mind. After ten nights, I started feeling exhausted and this in turn made me feel other things. Apart from the obvious – feeling worthless and having bad thoughts – suddenly I didn’t care about anything (myself, my job, my house…everything, really). And on top of this, the headaches intensified due to the lack of sleep.

Something had to change.

I approached my bosses and told them what was happening. Then I told them that I would no longer take the medication at night. I intended to take them at work. Their eyes widened, but, hey, I’m backed into a corner and have no other options. I know it. They know it. I can’t continue to have virtually no sleep as depression is setting in and who knows where that will lead. On Thursday, I took my tablets at 8.30am. By 9am my brain had disconnected and I felt like an alien on a strange planet. I couldn’t think yet I was meant to be working. My speech was slurred yet I was meant to be answering the phone. I got extremely upset, because this medication is meant to lessen the risk of stroke, yet how am I supposed to function when I’m taking it? And this is long term, not for just a couple of weeks!

Anyway, by 10am, I felt my brain reconnect and I started functioning as a human again, but in slow motion. By 10.40am I was pretty much back to normal. In the afternoon, when I usually feel like a siesta, I was wide eyed and happily working my butt off.

I sleep well that night.

On Friday morning, I did the same thing. I had the same experience. As the people I work for and with know my situation, they just stayed away from me until my brain reconnected. Luckily, the phone didn’t ring, so I didn’t embarrass myself there.

But is this a life I want? Is this what I can look forward to in the future? Yes, I can now sleep a lot better. That is better for my mental health, so maybe as I catch up on the sleep I’ve missed, I’ll be more able to cope with the situation. However, I’m not allowed to be stressed but I have to be a zombie at work for an hour or so, which makes me stress.

I return to see the specialist in two weeks. He will be told what’s happening and hopefully he will offer a solution to the problem, or maybe my body will grow used to it. I don’t care which of these things happen, all I know is that I don’t want to be a zombie for two hours each and every day. I have enough trouble being a human!

So, yes, I make myself laugh over my own wit at times. But it’s good that I can laugh. I need it. Seriously, I really need it. And the ups and downs (quite literally) of my medication will have me laughing all the way to a mental institution, if I’m not careful.

Personal: Where’s a Crystal Ball When I Need One?

Fifteen months ago, I moved away. Away from everything and everyone I knew. Away from my place of work, my family, my friends and the city that I called home. And in some ways, I moved away from civilisation. I did it for no other reason than to buy a house because houses are too expensive, way beyond my means, in the city I moved away from. In the new place, houses are cheap, but that is because there are no jobs in the area.

In order to survive I have to commute to work. Four hours a day, five days a week. In turn, this means I get up at 5am and I get home at 7pm. In winter, it is dark when I leave my new home and dark when I return. All year round, the shops are shut when I leave in the morning and shut when I arrive home. Being a small town, the shops in the new town only open for a couple of hours on Saturday morning. They don’t open at all on a Sunday. And…I work too far away from shops to be able to visit them at lunchtime.

Apart from my immediate neighbours, who I’ve heard more than seen, I don’t even know what the people in my street look like, let alone anything else about them. We have no friends in the area and don’t have a hope of making any with the hours I keep, and the exhaustion I feel.

I feel so tired in the evenings when I get home I don’t have the energy to do anything for myself. Nothing that might relax me, nothing I enjoy. No internet, no writing, no reading, no knitting. Nothing except eat dinner, wash up, make lunch for the next day and then sit in front of the TV for an hour before going to bed. I sleep, if I can, then wake up and do it all over again.

I wanted to buy a house for security. Security for the future – for when I’m old. G didn’t care one way or the other, but it meant a lot to me. It was something that consumed me, worried me.

Now I’m buying a house. It’s what I wanted, needed, dreamed about.

So imagine G’s shock when I told him recently that I’m not happy. He was genuinely gob smacked and G always has plenty to say! When he asked me why all I could say is that I feel totally isolated from everything – especially family and friends. The isolation is so bad that I even feel isolated on the internet. I find myself withdrawing from community networks, from blogging, from life. I feel myself sinking into depression. I have nothing to say because I do very little apart from travel, work and sleep. On the weekend, I don’t want to travel to see familiar faces because I’ve done too much travelling during the week. Besides, I never spend time at home and I want to get to know the place.

Depression is an ugly thing. It takes hold and won’t let go. It takes the remaining bits of energy away as well as any motivation I might have to do anything. Just as bad are the thoughts such as “what’s the point” which crowd my mind all too often.

I’ve become adept at hiding my feelings and carrying on regardless. But I spent over a decade of married life pretending everything was all right, when it wasn’t. I spent at least two years after the death of my son pretending I was coping, when I wasn’t. I don’t want to spend the next ten years pretending I made the right choice, when I fear I haven’t.

On top of this, I have the added burden of health issues. I’m not allowed to be stressed. I’m in danger of having a stroke. I sleep little. I’m suffering terrible headaches at least three times a week and recently I had a headache for an entire week. And not “just” a headache, it was very much like a migraine, but an ongoing, never ending one that went day and night for 8 days. None of this does anything to make my depressed state any better.

What do I do? Sell up and move back to the city? Hold tight and hope my health improves and with it my mental state of mind too?

There are no jobs where I’m living and I can’t afford not to work. But if I sell up I’ll be back where I started. If I don’t sell up, I have to find a way to combat the isolation problem before I lose motivation permanently.

What do I do? I don’t want to look back on this time in ten years and regret my decision. I don’t want to think, “If only I’d hung on” or “If only I’d sold up”, but what’s the right decision? What’s the best thing to do?

Oh my God, I have no idea!

Personal: Bone Marrow Biopsy

Just about every serious illness I’ve had in my life is connected with my blood. I’m registered on the rare blood type register yet I’m not allowed to give blood due to a blood disease my grandmother died of in the late 1980’s (it’s not known if it’s heredity and no chances are being taken). I have very low blood pressure, very high platelet count and I’m anaemic. It’s a wonderful combination, but in my non-medical opinion, I think being anaemic is working in my favour right now.

Anyway, due to the high platelet count, which has reached dangerous levels, I had to have another bone marrow biopsy on Tuesday (my last one was five years ago when my blood disorder was first diagnosed). Painful! It’s not pain in the same sense as when you cut yourself. It’s a painful discomfort as they scrap the inside of your bone, which sends a horrible sensation down your leg and up your back. It’s not pleasant.

Bone marrow tests are used to check whether your bone marrow is healthy. These tests also show whether your bone marrow is making normal amounts of blood cells.

Bone marrow is the sponge-like tissue inside the bones. It contains stem cells that develop into the three types of blood cells that the body needs:

Red blood cells carry oxygen through the body.
White blood cells fight infection.
Platelets (PLATE-lets) stop bleeding.

– taken from the National Heart, Lung and Blood Institute website

High platelet count is called Thrombocytosis. This means my platelet cells cause clots to occur when I don’t need them. It can be dangerous as the clots can travel through the blood to the brain and can cause a stroke. It’s a scary thought.

I have a few more tests coming up before I have to return to the blood specialist. Maybe then I’ll be put on medication to control this disorder … and hopefully that will take some of the danger away!

Personal: Stroke Symptoms for Women

I have a blood disorder.  It was diagnosed six years ago and I had to have regular blood tests to keep an eye on it – every three months.

Four years ago, my son passed away and I stopped having my blood checked because, quite frankly, it was the least of my worries and I honestly didn’t care what was happening with it.

Five months ago, a scratch appears under my right eye.  It was barely noticeable and I gave it little thought.  However, as the days turned into weeks and the weeks into months, it hadn’t healed and I realised that it was getting bigger and was beginning to bother me on occasion.   Finally, I went to the doctor to check to ensure it was nothing nasty.

It was!  It was a sun cancer and it had to be cut out.  That happened on Tuesday, 25th May 2010.

On that same day I was “told off” by my GP for not having my blood disorder checked for four years.  I told him the reason for that and he didn’t seem to think it was a good enough reason… {shrug}

Anyway, he took blood and when I had the stitches removed for the sun cancer he told me that my blood disorder had blown out of control.  It was now in the danger zone and I had to make an urgent visit to a specialist.

The specialist, who I was also seeing five years ago, also gave me a “telling off”.  He didn’t seem to think my reasoning was that good either.  I didn’t bother telling him that I didn’t care if my blood disorder killed me.  I just shrugged and said that I was doing something about it now and nothing could be done about the past.

He looked at me and said, “I can’t express strongly enough how serious this is.”

OK.

“Do you live alone?” he asked.

“No.”

“Good!”

OK, I believe he means what he’s saying.

“How do you feel generally?” he asked.

“Fine, except for the headaches, aching legs and fatigue,” I replied.  “But the last two are because I commute to work and the seats are sometimes uncomfortable.”

“That may be a contributing fact, but it’s more likely to do with your blood,” he tells me.  “Karen, you are at a very high risk of having a stroke at any time,” he adds.  “This is a dangerous situation you are in.”

If he was trying to scare me, he succeeded.  I have to have more blood tests, another bone marrow check, xrays and ultrasounds and they have to be done quickly.  He told me to stay stress free, which I said nothing to but thought that’s not going to happen.  The mere fact that he said these things to me has put stress on me.

Today, I did a bit of an internet search to find out about Stroke Symptoms for Women.  I already have all but two of the symptoms!  {takes deep breath}

Now I just have to stay calm and relaxed until all the tests are over, the results put through and the specialist decides what to do next.

Stepping Back for a While

Life is throwing too many curve balls at me at the moment. I’m not coping particularly well with it and have decided to step back from the unnecessary things and give myself time to recover as my health has been affected by what’s going on.

I wrote through the first week of the trouble and managed to be a “winner” for NaNoWriMo, but I don’t feel like a “winner” in life right now.

My writing has abruptly stopped and I won’t be pushing myself to return to it unless I’m ready and willing. This website is no longer important to me, so for the time being I will take some time out and see what happens. It might be a few days before I return or it might be longer. I honestly don’t know.

I won’t be spending much time at the message board or email writing group either. I might drop in from time to time, but I will make no promises as to how much I’ll participate in discussions.

I will, however, try to meet my obligations with the anthology. So if you are an accepted author, at this stage the anthology will go ahead as normal. Too many people are involved in this project for me to step away from that too, so it will be the only online commitment that I will continue to deal with for the time being.

I will drop in to read the blogs of my regular haunts – you know who you are – yet I can’t promise that I’ll leave comments on your posts. Please know that you are the people I often find inspiration from and that’s something I need right now – inspiration, happy thoughts, love. Find it in your lives and write about it, because I need to know the world is not all dark and miserable.

I’ll be back when I feel able to fit more into my life. Right now, I must take care of me.