conceptual stunt double

On Thursday, after a wait of a couple of months, I had an appointment with an Endocrinologist. I foolishly assumed this that this time would be spent trying to fathom out some reasons for my thyroid hormones suddenly being all over the place. Instead, I was met with repeated accusations of not taking my tablets and not being honest about it. He actually said “I will fall off my chair” if there is any other reason. This, along with being spoken to like a naughty five year old, did not fill me with confidence in anything he had said to me. Sure enough, some simple research by a friend showed numerous possible reasons for the glitch, along with glaring inaccuracies in the “facts” he relayed to me concerning where certain things are absorbed in the body. Was he lying, is he not fit for his job, or does he just not care?
The thing that sticks out most is the fact that one of the other tablets I am taking is known to interact with thyroid medication, making it less effective. This is the same medication that I had to increase about 8-10 months ago – around the time that I started to feel a drastic lapse in my health. Surely someone who purports to be an expert in the field should know about contraindications, or at least look them up when someone is taking a variety of medications.
I’m angry.
Time continues to pass.
I continue to slow down.
Certain people in the medical profession continue to not give a fuck.
At times, I wish I were able to trade places with someone like him for a few days. I can’t imagine ever being so dismissive of someone who is in pain and unable to do so many of the things that they enjoy, or things that most people take for granted.
I am existing.
I am not living.
People are so quick to jump to the first conclusion that comes to mind. Sometimes this means they miss the obvious. My body is grinding to a halt whilst my life wastes away. There are things I want to do with this time, with my life.
Just when I had been starting to regain some sort of faith in medical professionals, it’s been shot to shit again.

A few years back there was a place.

A place where there were people I liked.

A place where I felt secure in myself.

A place where I felt welcome.

A place I felt belonging.

Then something happened.

It snowballed from nothing, as these things do.

Then the place was gone.

I went back to being wary of people.

I went back to feeling insecure.

I went back to not getting involved.

I went back to observing from the sidelines.

I went back to not participating.

And now I struggle to make connections.

Always finding the bad.

The imperfect.

Some reason.

To not get involved.

Or invested.

Now I feel secure here.

With me.

In my tower.

Looking out.

Few people have a key to a door on the way up.

Fewer still have one to the summit.

I don’t think I’m going to be pressing any new copies in the near future.

Some days I feel removed from the world. I observe but there is a barrier. I interact but there is no connection.

I like to be alone. Before I lived on my own I worried that being alone the majority of the time would be depressing. I’ve actually found it to be rather empowering. My space feels comfortable and secure. There are no other energies here to interfere with mine.

I live in a flat in a large, double-fronted Victorian house. If I could I would rather be in a detached property in a more remote location; where I can’t hear other people go about their daily business. Where I don’t have to see anybody unless I choose to. I don’t want for a huge house or a luxury car. I long for uninterrupted solitude when I want it. Maybe some canine company. People are so disappointing. I’m sure I have proved so myself many times. In times gone by I would become a hermit or the scary witch in the woods with dogs instead of cats.

My question is whether this is a healthy longing. Is it partially depression and a lack of energy which lead me to feel this way? Is it just easier not to have to deal with people? Is it good enough to merely feel this way because it’s how I feel? Or have I simply adapted to the way things are? Am I protecting myself? I’m not sure, at this moment in time. I do know that I don’t equate solitude with loneliness. I feel lonely when I see a world that I don’t know my place in. When I reduce that big world to my world, everything is okay.

Stress makes my symptoms worse. Hospital visits cause me stress. Physical exertion coupled with stress makes for a very uncomfortable evening. Adding these factors on a day when holding my phone to my ear for more than a minute is a challenge my arm is far from up to makes for an evil kind of pain. Can’t sit still. Can’t move around without making things worse. Can’t get comfortable. It’s times like these that I really don’t know what to do with myself. Currently, I am stretched out on the floor, hoping for some relief; trying to distract myself with the clicking of keys as I type.

This morning the sun was out in full force. I’m not a huge fan of summertime but there is something to be said about the feeling of the sun’s heat shining down upon your face. When everything is red even with your eyes closed. Taking in the pleasure of the sun on my face makes me feel alive. If I could feel it over my whole body, lying here now, I’m sure it would make me feel infinitely better. The healing power of the sun. Somehow, a storage heater doesn’t have the same effect, I wonder why that is…

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: Having to think about absolutely everything I do and the effect it will have on me
5. Most people assume: That I have hurt my leg
6. The hardest part about mornings are: Getting out of bed and putting weight on my feet when it feels as though I have shards of bone growing through the bottom of my heels
7. My favorite medical TV show is: Grey’s Anatomy
8. A gadget I couldn’t live without is: Lappy McLaptop
9. The hardest part about nights are: Getting to sleep. Staying asleep. How long they are when you’re not asleep
10. Each day I take 6 pills & vitamins. I’ve given up on the strong painkillers I was prescribed due to the effect they were having on my clarity of thought
11. Regarding alternative treatments I: am sceptical – though if anyone knows any 1 minute power meditations I’m sure I could give it a bloody good go
12. If I had to choose between an invisible illness or visible I would choose:I guess better the devil you know
14. People would be surprised to know: I used to lug around 50kg bags of animal feed without a second thought
15. The hardest thing to accept about my new reality has been:Sitting in a room with a strange woman questioning me over every aspect of my life and having to tell her in minute detail all of the ways I am affected and being reduced to tears. It’s hard to think about and some things are hard to admit to friends, let alone strangers judging you.
16. Something I never thought I could do with my illness that I did was: There is nothing that I can recall
17. The commercials about my illness: I don’t think there are any
18. Something I really miss doing since I was diagnosed is: Being able to do anything very physical
19. It was really hard to have to give up: The anger
20. A new hobby I have taken up since my diagnosis is: Monging on the sofa
21. If I could have one day of feeling normal again I would: Get myself down to the nearest dogs’ home and spend the day walking dogs
22. My illness has taught me: That constant pain fucking sucks
23. Want to know a secret? One thing people say that gets under my skin is: It’ll be ok – I guess that in the case of people who know me it’s partly about assuaging fears, rather than a dismissal.
24. But I love it when people:Know enough to approach a hug with care and not pat me on the back as they do it…
25. My favorite motto, scripture, quote that gets me through tough times is: Most stuff like that makes me feel nauseous. Hakuna matata, bitches.
26. When someone is diagnosed I’d like to tell them: That I think for a lot of people, getting diagnosed is one of the hardest steps
27. Something that has surprised me about living with an illness is: How much it rules everything
28. The nicest thing someone did for me when I wasn’t feeling well was: Just day to day things but things which are very much appreciate none the less. Made me food, brought me drinks, distracted me, heated towels to wrap around sore joints. Someone tried to push me around the British Museum in a wheelchair with the brake still on >.< I think she was just trying to cheer me up ;)
29. I’m involved with Invisible Illness Week because: I thought it meant that it would make my illness go away…I’m rather behind the times anyway, as it is not actually Invisible Illness Week, nor has it been for some time.
30. The fact that you read this list makes me feel: Apprehensive

I was going to spend some time writing about something this evening but I really don’t have the energy. Then I remembered a story that I read some time ago which goes some way toward explaining what it is like to be ill.

bad sleep -> pain -> can’t move -> no exercise -> more loss of condition -> more pain -> bad sleep

I seem to be coping in fits and starts. Pain-wise things are quite difficult at the moment. When my brain is telling me  that I am in pain, how am I supposed to ignore it? I know that there is no reason for the pain; that it is “just” messed up signals but the net result is the same. Knowing doesn’t make the sensation of physical pain any less. I’ve come to be a disbeliever  in the mind over matter debate. Pain, pain go away, come again another day. Except don’t. Please.

Even in cyberspace shyness reigns.

It is apparent that there has long been a battle raging within me over the question “Am I deserving?” Whether it be of friendship, love, care. The answer is often a resounding “no” – though the majority of times it is not a conscious question or answer; more an organic process. My interactions with people close to me, my choices and decisions all form the question and build toward an answer.

Recently, I have been attempting to be more conscious of this battle; to launch a preemptive strike against my self-deprecating habits. It’s resulted in a newfound level of appreciation for the good people in my life, who are way too few and far between. That’s not to say I didn’t appreciate them before but there are definitely things, people, that I haven’t cherished, myself included.  My starting point has been to try not to second-guess my friends’ reasons for wanting to know me and spend time in my company. With everything that has happened, I have been depressed for a long time. Sometimes I suspect that it is merely my natural state. Maybe it is the way things have been for so long, it has become home. Medication has definitely helped improve my ability to control certain thoughts and emotions. I have felt so out of control at times. That paranoid, suspicious state of mind has had free rein for years. I am certain that it has lead to me losing touch with people who could have become good friends and damaged other relationships. On the other hand, I am really not a big fan of people in general and would most definitely not trust the majority of them as far as my becrippled self could throw them. On two occasions in particular, I have inexplicably had complete lapses and befriended people, very closely, who have totally taken advantage of me and further damaged my ability to trust. Was this purposely self-destructive? I don’t know for certain.

Conversely, the effort to take more care over my relationships with others has led to me taking less direct care of myself. Whether this is a function of having an extremely limited pool of energy from which to draw or a desperate reallocation of destructive behaviours, I can’t say as yet.