So glad you've come...

Welcome to Tigressland, my own personal little corner of the Internet where I hang out expressing my views about the smaller things in life. No controversy here (I'm saving that for the book lol) just the everyday minutiae that add up to my rather unpredictable, but always fun, life! So pull up a cushion and come chill.....and follow! We bloggers love it when you follow ;-) ~Tigress

Thursday 12 March 2015

What I have...not what I am.

This is one those entries that kinda has to be written.

I am not particularly one for defining myself via medical conditions I have. This will never be a ‘Medical blog’, nor will any of my conditions make it into the description atop my wee corner of the Internet.

But I am a Tigress....born in the year of such stripy animals, and as such, I do not turn down opportunities in life and this I consider an opportunity. Not only to inform others of the reality of another’s oft physically painful life...but also to help them understand it from that other’s point of view.

What follows is a, probably rather disorganized, description of stuff my body has along with the effects thereof. I am tired today, dog tired....hence the inspiration to take the time to write this. I am tired but I am happy.

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Fibromyalgia is an insidious disease....or, more correctly, a ‘syndrome’: a collection of symptoms hanging out together that make up a ‘condition’. It involves, by definition, ‘pain of unknown origin’ (really helpful).

Ankylosing Spondylitis and Sacroilitis are part of a cluster of conditions know as seronegative spondyloarthropathies and can generally be referred to as a pain in the ass (as well as several other places).

Hypermobility is the ability to stretch your joints past what is considered normal. This can be responsible for irritating the nerves in said joints more often than usual and generally causing pain wherever the hell it feels like it.

I have all three of these conditions; though, at present, specialists are not sure of exactly which spondyloarthropathy I have, or which condition is responsible for most of the pain.

If you ask me on any particular day how I feel....’sore’ is the correct answer. But I can’t be arsed explaining why (not that anyone probably wants the full answer anyway lol) so you'll usually get a smile and ‘good’.

And that’s not a lie. I do feel good, because that is what I choose.

And I make that decision every day.

There is no other choice for me.

When I wake up in the morning, I put my feet on the floor...they hurt. I take Naproxen (an anti-inflammatory) twice a day, but still, every morning I wake up and my feet hurt when I stand on them....to the point that I cannot walk correctly for several minutes until much of the pain subsides. This process repeats every time I sit/rest during the day for any period longer than about 20-30 minutes. I stand up, they hurt...I walk funny, they loosen up, I do stuff, I sit......rinse and repeat.

All I can say is thank God for good sports shoes and inserts. I wear high heels only about once a year and under close supervision.

I have similar difficulties with my hands though they are seldom idle throughout the day. Pain most often occurs in my hands when I attempt to, say, grasp a thin string tightly or have been sitting still watching a movie and then try and grasp my drink.

I also have pain in my ankles, knees, wrists and elbows .This varies depending on level of previous activity, weather changes....or unknown factors in the universe that decide shit with no regard to anyone’s well-being whatsoever.

Now unfortunately, it’s not just the peripheral bits that hurt. Due to my sacroiliac joints (found at the back of one’s pelvic girdle) not being up to snuff....I have episodes of severe pain in that area as well as stiffness in my lower back in general. Walking is not fun at these times and pain killers are required en masse. But Naproxen largely avoids these flares now. This is a pleasing development.

That’s about it in the pain department....stuff hurts every day and I take pills to stop as much of it as I can. If I don’t take those pills, I don’t really feel inclined to move....for the most part because not only does all of the above hurt more severely, but I develop costochondritis, or inflammation of the cartilage at the bottom of the ribs that makes even turning over in bed a mission of epic proportions.

Needless to say I like Naproxen.

Other shenanigans that my body gets up to are as follows:

I am positive for the gene HLA B27, making me significantly more prone to the above mentioned spondyloarthropathy cluster of conditions. Other effects of this gene that I have experienced include regular bouts of iritis (inflammation of the iris of the eye) and possible reactive arthritis (should have gone to doctor but didn't, so just my self-diagnosis there): a temporary arthritis in reaction to an infection (particularly bladder or stomach). The former involves pain, inflammation and redness in the eye requiring steroids and dilating drops, the latter manifests as soreness (particularly in the weight bearing joints) as well as Achilles Tendonitis (making for one very sore tootsie for a long period of time).

Other eye issues include bouts of dry, irritated eyes that require drops.

The hypermobility means that basically I hurt myself more easily than most, coz things stretch further than they should. This makes gym time fun.

Then there’s the rest of the Fibro fun and games. Fibromyalgia not only causes pain, but also some major doses of fatigue. You develop quite sudden and overwhelming desires to lie down on frequent occasion and these tend to be non negotiable. Some days you will feel quite good and go hooning around like a mad thing doing a bunch of stuff only to feel like death warmed up the next day. Life is about balance with Fibromyalgia....a balance I am apparently yet to learn.

Fibromyalgia also means you sleep like shit...no other way to describe it really. I am lucky in that I have trained myself to fall asleep fine....but I often wake up at stupid times and cannot return to a deep sleep. This does not help one’s concentration and energy level issues the next day.

Fibromyalgia also makes your body sensitive to everything. And I mean everything.

Food: I am gluten, dairy, yeast, caffeine, aspartame and alcohol sensitive (significantly reducing or avoiding these has lead to a considerably better mental and physical state)

Noise: it irritates and stresses me, especially loud or incessant noise....I much prefer quiet, though I do tolerate most music very well. 

Temperature extremes and changes: My body strongly dislikes cold but also stops working in the heat....I have a functioning range of temperature that is not that wide....air-con is my best friend here in Perth.

Light: My eyes are hypersensitive to light.... (Though unrelated, I also have a photic sneeze reflex – I sneeze at the sun/bright light)....I have to wear sunglasses everywhere, even in winter on glary days, and I strongly dislike ‘white light’ indoors.

Skin: My skin can become sore for no reason...none at all...just becomes sensitive to the touch for no reason whatsoever....quite ridiculous. Getting poked in one of the 18 Fibromyalgia ‘tender points’ ain't exactly fun either. 

Everything else: Anxieties are common with people with Fibromyalgia. I strongly dislike telephones and am not all that impressed with crowds either. Am also prone to vertigo in some situations.

Another delightful wee facet of Fibromyalgia I sometimes experience is ‘Fibro-fog’. That is, I lose track of what I'm saying mid statement; I cannot recall the spelling of simple words or cannot recall the specific word I want; I have frequent periods of low concentration and attention span and I have difficulty remembering some recent events (though have crystal clear memory of others).

There are other random things that my body does but they are probably not related to these conditions and will be part of further investigations. These include heart rate abnormalities, reactions to local anaesthetic, aseptic cystitis (the symptoms of bladder infection without any actual infection present.....particularly clever I thought) and various stomach and bowel complaints that seem to be above and beyond the Irritable Bowel Syndrome I've also been diagnosed with. I'll just keep up the doc/specialist visits till we have the full story.

But enough of what’s wrong....what’s happening to fix these things? Well before we get too cutely optimistic let it be known that all three of these conditions are chronic (ongoing) and incurable. But stuff can be done to manage them.

Exercise is a good therapeutic aid and I am in the process of being prescribed a physical therapy routine to work within the bounds of my Fibromyalgia, around my sacroiliac issues and toward strengthening muscles to support my hypermobile joints. I am very much looking forward to this as when I am left unsupervised, I go all out and consequently write myself off for days.

I am currently trialling the drug ‘Lyrica’ for sleep issues and pain management. It seems to be helping a little with the sleep but not so much with the pain just yet. Doses can be increased, we'll see how it goes.

I have made many dietary modifications (as mentioned above) and believe this has significantly improved my Fibromyalgia symptoms, but there are still more I can investigate. Following the FODMAP diet and/or removing nightshades (potatoes, tomatoes, eggplant and capsicums) from my diet are the next step but I want specialist evaluation before I go changing anything else.

But probably the best way to fight these conditions is by simply not giving in to them or letting them define you. I am a global citizen, a Kiwi, a committed partner, a mother, a daughter, a humanitarian and a friend long before I will ever be a Fibromyalgia sufferer or cancer survivor. I get up each day, enjoy each day, be thankful for each day and put everything I can into each day. I surround myself (virtually and actually) with positive, caring people (my gratitude to my Kevman knows no bounds here), smile at strangers and genuinely appreciate everything I still have to offer this world.

I may be a broken-ass bitch but I’m still a damn lucky one. I get to wake up, stand up and step up each day...and that’s all I need to know.

Till next week! Be awesome ;-)


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