Miracle Drug Day 1

Miracle Drug Day 1:

The miracle is that I am still alive.

The side effects are lining up to be heard. I didn’t think it possible, but if feel worse than before, especially with the pain. For a drug that is supposed to fix the problem, it’s funny that the problem suddenly got worse. I am getting weird shooting pains that I haven’t had in a while, making my whole body jump. I haven’t had them so much since getting my first miracle drug that has now been relegated (by me) to just a regular drug.

Issues have also moved into my mouth and my throat. If I didn’t know any better I’d say I was getting sick, like what others say is “really sick”, you know the type of sick that normal people get, like the flu or chicken pox or something. At this point I’m not sure if I am getting “sick”, having a flare or having side effect issues. What I do know is that I felt so bad that I decided to order regular pizza, not gluten free, and garlic bread and Coke. (Whoa, now that’s crazy living right there). I guess my body is crying out for something. Maybe an immune system boost? With pizza?

I have this pretty cool thing to teach in Art tomorrow and I don’t want to miss the day because I’m feeling crap or getting sick. And then there’s the problem of a Dr certificate, I don’t remember how many days I’ve taken without one. If I am sick I will have to go see him but I’m sure it’s really the new rheumatologist guy who I should contact if these symptoms continue carrying on. I’m just not that good at doing all that caring for my stuff stuff. But there’s no one else to do it for me.

What does pain feel like?

I often wonder how what I feel as pain compares to what others feel as pain.

Other people and myself use similar words to describe different types of pain, such as “a thin sharp knife piercing my hand” and “a gnawing grinding pain in my chest” so I know the pain I have is the same types of pains others have. Putting words to pain is helpful in this way, as doctors can get a sense of what could be going on according to the types of pain felt and where.

I am also getting better at categorising my own pains. Thudding pain, dull heavy ache and sparks of nerve pain are all very different in feeling and in how demanding they are of my attention.

However, the intensity of pain according to my own head’s reading of that pain is a lot harder to compare to how others interpret pain.

When someone else says they are in terrible pain and are at an 8, are they at 8 on my 1-10 scale of pain?

or would I call that a 6? or a 10?

Am I weak and basically a hypochondriac with all my whinging about pain?

or

Am I bearing a lot of severe pain, more than most would get up and go to work with?

or maybe somewhere in the middle?

Apparently my body perceives more pain that it should. That is part of fibromyalgia. I know that to be true because sometimes a child grabs me on the arm to gain attention and it hurts enough to make me wince and tell them not to, when it’s really an innocent action that is probably done to other teachers without this reaction. I bruise easily too, so I see the physical sign of that child’s grab as well.

Today the pain was bad, especially in my legs and hands. I think it really was bad and I perceived it as even badder. Double whammy. Maybe some of the worse pain I’ve had while at work and walking around. Like always, I didn’t explain it to anyone and I didn’t go home. I started walking more like a hip swinging waddling duck this evening. Feeling like I couldn’t cover it up started getting me down and made me feel small and unimportant.

The worst part of this is, the pain in my legs is becoming unbearable and I have no choice but to push through it and try to cover it up all over again tomorrow.

Hope is what gets me through. Hope that my current tests are going to show something. Hope that my Dr tells me something I can bear and hope he can give me some medication that helps. One thing is for certain, after tomorrow I have 5 days to recover and work all this diagnosis stuff out before I have to work again.

Testing times

Currently I have been undergoing diagnostic tests to see if perhaps another illness could be added to my list of complaints. One might think this is a productive process as information will come from these tests which can be used by my rheumatologist, that can inform treatment. Yes, on paper tests seem like a good idea. But in reality, I think tests are becoming more and more a bad idea. For me anyways. Here are five reasons why:

1. I am hypersensitive to pain. That means that my body receives pain about five to ten times what most other people feel. Therefore, “You will feel a little sting” means nothing to me. With my body, there is no little sting, especially when you are prodding about trying to find my deeply hidden veins with a needle.

2. Tests take a while, results take a while, appointments take a while. Living in waiting mode negatively affects your mood, your mental state and your capacity to stay positive. Each appointment leaves me flat like a pancake and I can feel depression hanging there just waiting to get in.

3. Often tests don’t show any conclusive results anyways.  Unfortunately, just because it can’t be seen in testing doesn’t mean it’s not there. Possible waste of time, money, pain and effort. Did I mention that this is the third time in six years I have lined up at the rheumatologist for a diagnosis?

4. The doctors are lovely, the nurses are lovely, the staff are lovely, but there is not getting around it, doctor’s surgeries, pathology offices and hospitals are full of sick people.

This last point really hurt me today. I am very sensitive to others’ feelings, so even in my fatigued zombie state I did not miss two key signals today. The first hurt was when I was in the MRI waiting room, waiting my turn. The lady before me had gone in to be tested and had left behind two middle aged sons. After some random banter they started talking about Mum’s tests and the word inoperable came out. That word made me sad. Sad for the lady and sad that the world has this word.

The second signal came when I was redressing after my MRI was done. Which, by the way the testing lady said I stuffed up because my leg twitched and moved before the contrast went through. At multiple hundreds of dollars, this better not be true, especially with the amount of pain I was in today. The second signal was impossible to miss. Somewhere in the passageway in the pathology area a small boy (he sounded maybe seven or eight) was screaming. Screaming in pain and desperation begging for whoever was trying to do something to him to stop. “Stop it, stop it, don’t, leave me alone” type screaming with full volume and distress. That made me upset. I silently prayed that this boy’s discomfort is short lived and his illness is acute such as with an injury rather than chronic and/or possibly terminal. I am sensitive to others’ emotions and with this being a child, hearing his pain really hurt me inside.

5. Situations like this highlight the empty space beside me. Having a partner to support me in stressful times would be nice. Everyone else seems to bring someone with them in these places.

Perhaps it is third time lucky and all my symptoms get categories finally, and I don’t have to do this ever again. I can only hope.

Chronic Illness, working and recovery days

When you have a chronic illness you lose the control over your body, your physical wellness, that you used to take for granted.  One particular problem I have is balancing work, rest and everything else.  It would be ideal if I could work four or five days a week and then have enough rest time to ease off my symptoms so I could continue working happily the next week. Of course, this presumes there are only two things to consider, work and rest.  There are many more things to consider obviously and that is one part of the problem.

Energy is very limited in my life.  It is very easy to “overdo it”. Sometimes five days of work is too much.  If I encounter extra stress, a night out, an after-work work commitment or a sixth day of work or effort on the sixth day (say, a child’s birthday party or for me this week, a day at uni) then I will have overdone it and my body will certainly tell me about it.  The idea that I can just have a good sleep and it will fix it, or toughen up and bear it or put it out of my mind and I will get over it, does not work. Let me say it again, advice concerning mind over matter DOES NOT WORK. I use caps here not just to yell at you, but to yell it at myself as well.  Some days I foolishly think I can ignore my symptoms and press on.  It never works. Never.

In the old days before chronic illness reared it’s head, I did stupid things like driving with a migraine, teaching while coughing up chest infection, and working in customer service while experiencing the heights of chicken pox (sorry if you were infected by me, but my boss wanted me to work). Nowadays I know five days at work means at least one recovery day of full rest, perhaps two. That’s work without any stress, just getting up, getting ready for work and going to work five days in a row demands at least one recovery day. Even if I am feeling OK, rest must be included in the following day or couple of days. Recovery days must have a level of rest where nothing much happens.  No shower, no jobs, no lifting, no cleaning, etc. I have things I do to keep me sane on those days and I have learnt how to have close to complete rest. If balance between work and rest is working well then those rest days are often quite comfortable.  However, when I have “overdone it” I end up having high pain and low energy.  Some people label this a flare.  Flares can be short, perhaps a day, or long, for weeks.  On flare days my body does not listen to my determined but fruitless efforts to help it.

Another problem that occurs time after time is that the timing of life events means that I can not just have a full day of rest when I need it.  Work needs me to be there.  Or my family needs me to be there.  Or I need to go to appointments or do jobs like shopping.  There are ways around some of these jobs, for example I order my groceries online and have them delivered, which helps enormously because grocery shopping can be very exhausting.  But I can’t avoid leaving home all the time, especially because I work.  Today, for example, I needed to not move. It is Sunday, so resting could happen, no work.  I just worked the first week of term, a busy five day week and the pressure to do many things at once, as often happens.  Then I had a full day at uni on the Saturday.  That uni day should have been my rest day, but I couldn’t rest, so the need for rest “snowballed” until Sunday.

When you have a chronic illness, often sleep does not refresh your energy and that was the case today.  I had slept well Saturday night but it did not fix the aftermath that I would feel from my six day week.  This morning I suspected that I was in a lot of pain, but I have become somewhat adept at ignoring it if I can just take some meds and sit in a comfortable place not moving and reading something engaging to distract myself, then sometimes I am not sure how bad it really is. Until I move that is. Then I feel hurts that I don’t understand.  For example, I spoke to my sister on the phone for five minutes.  That hurt my hand like a bad cramp and it was only five minutes.  I must have had my foot sideways because when I moved it the shooting pangs of pain made me “oowww” quite loudly.  When I am really bad, even not moving hurts in random places all over my body.  This morning, every move of my body to get up from bed was met with a wince or an oowww-type noise.

Unfortunately, as well as resting today, I also needed to go to the chemist for meds and I needed to buy some materials for class tomorrow. I rested and waited until I could not wait any longer.  The afternoon was definitely well under way and I needed to move.  I needed to shower.  I needed to drive up to the shops.  The effort of having a shower took the last tiny piece of energy I could muster.  I got through the shower and dressed and went to the kitchen.  Then it hit me.  Sliding to the floor with dizziness and anger at the pain, I am forced to stop.  I stopped briefly until the dizziness subsided and then I decided to turn to sugary food. That gave me a false energy, enough to get ready and head out.  I had no choice, I had to go. Struggling around the shopping centre, I waited too long to get a shopping trolley to use as a crutch.  The “old people’s'” walking cart on sale in K Mart looked so so tempting. But my mind regularly tells me I don’t want to look disabled.  I don’t want to look how I feel.  I feel like I ran a marathon and fell and was squashed by a pack of marathon runners.  There was a marathon today but I certainly wasn’t in it.  Jobs done, I made it home. Now I have to make sure I rest as much as possible this evening so I can go to work tomorrow without feeling like this.  Imagine trying to teach with the pain mentioned above.  It’s not fun.

I am never sure if the resting is enough, but it is all I can do. There were many more things I wanted to do this weekend, but they were never going to happen with this illness in my life.  I have a new level of activity these days and I have to force my mind to stop thinking of things I want (and need) to do and make myself rest.  If I don’t rest enough, all this pain will lead to a massive crash, a flare with the additional issue of fatigue, a fatigue that could make me couch bound for days or weeks. Every day is a new day and I never lose hope that the next day will be a good one.  That is how I get through and how I manage to keep working.

Image Credit: Samantha Kira Harding

Hello, what is this? My inner onion.

So I decided to start a blog. It’ll be interesting to see if I manage more than a couple of entries. I’m not sure what it’s about yet. It could be kind of like Seinfeld, a blog about nothing.

I am one of those people who has a lot going on in their head at a very fast rate, all the time. Interestingly, I have a friend, Christine, who I believe thinks faster than me. Just one. Person that is. Who thinks fast. I don’t really have friends. She is a work colleague, a fellow teacher, whom I am friendly to and with. And because Christine is so smart and witty and thinks quick, I really like talking to her. So I could kind of say she is a work friend. Those of you who don’t hold personal friends will know what I mean.

I have been a bit upset with my head lately. It’s not what it used to be. I think my head is morphing. Not physically (well I hope not), but in processing. My mental processing is becoming quite scattered and unorganised. I don’t think it’s ageing. I think it’s because I’m on a lot of medication and my health is a roller coaster ride. My life is morphing too. I’m becoming reinvented as a person, at 41. What the hell am I talking about? Well, since just before I turned 40, my world as I knew it, has, layer by layer, peeled open like an onion. In fact, it is still peeling and it has made me cry a lot.

Inside my inner onion I found:

-I am single (first time since I was 17)

-I am happy single

-My ex bf’s behaviour was shit

-I have a chronic illness, and possibly more than one

-I love my job and will try to keep teaching

-My son is my rock

-My son, who is my rock, is gay

-I love all sorts of things like art and clothes and vintage stuff

-I like travel and adventure

-Some days I just have to do nothing

-I am in charge of my life

-I like to challenge myself in my life

-I can make myself happy

So I guess my blog will be about this stuff. It will be about living and loving life, no matter what.

Hello.

My name is Lisa.

And this is my blog, lovemylifeanyway.