Longing for a Simple Touch

It has been a funny couple of weeks. I’ve had new symptoms, new ailments or perhaps you could call them sensations. What ever label I give them, the outcome is still the same as always. Pain, lack of mobility and days of not being able to be touched. Someone simply touching my arm to comfort me is painful. My skin feels as though its covered in bruises. Those deep, dark bruises that make you yelp at the slightest bump. Then there are the areas on my body that any pressure, even from clothes that maybe a little tight such as waist bands on pants or sleeves on a top that is fitting, touching those areas makes me nauseous. I actually have shoved people away when they have touched these areas. A reaction I had no control over but a protective measure from the sudden pain.

My muscles feel like the turn themselves into knots. Usually in my neck, shoulders, back, buttocks and sometimes thighs. Last week for the first time ever this knotted muscle pain was in the muscles just above my ankles. It was the weirdest sensation to date. It made walking a struggle as my ankles couldn’t straighten. I walked for days with my ankles turned at wrong angles. I walked on the outer sides of my feet as I couldn’t stand with them flat on the ground. If you could call my slow little shuffle a walk at all.

My daughter remarked my feet looked weird, like they had been scolded in boiling water. They were red, puffy and the skin was shiny yet they were not as swollen as they have been previously. I could still wear my shoes which was a plus. The skin above my ankles was also red. Bending my feet felt like the bones had been broken and were still mending, as if every bend, every flex was cracking the newly mended bones. This whole ordeal lasted several days before it finally started to improve.

During this whole time the rest of my body cried out too. It cried out “don’t touch me”. It has been 7 days without a simple hug. 7 days without the kids being able to even bump me, hold my arm or touch me in any way. My poor cats cannot even sit on my knee for their much loved pats.

My son made me smile though and reminded me that this won’t last forever. In a few days, a few weeks at most I’ll be able to be hugged again but until then I have an inner strength that keeps me going, keeps me smiling. The knowledge that eventually the biggest hug of all is coming my way keeps me pushing on every single day. The thought of that gentle comforting touch of someones hand upon my arm reminds me not all is lost. Its just another hurdle I must jump in the relentless battle with Fibromyalgia.

This Brosh Pain Scale made my day though so I had to share it. So much better than the traditional pain scale doctors use. I might take this into my next appointment to give my Doc a laugh.

0: Hi. I am not experiencing any pain at all. I don’t know why I’m even here.
1: I am completely unsure whether I am experiencing pain or itching, or maybe I just have a bad taste in my mouth.
2: I probably just need a Band Aid.
3: This is distressing. I don’t want this to be happening to me at all.
4: My pain is not f—ing around.
5: Why is this happening to me??
6: Ow. Okay, my pain is super legit now.
7: I see Jesus coming for me and I’m scared.
8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.
9: I am almost definitely dying.
10: I am actively being mauled by a bear.
11: Blood is going to explode out of my face at any moment.
Too Serious For Numbers: I probably have Ebola. It appears that I may also be suffering from Stigmata and/or pinkeye.

http://www.rasch.org/rmt/rmt264f.htm

The Fibromyalgia Curse

On Saturday I had to attend a Workshop for my Housing Co-op. It didn’t faze me going to it, I had in place everything I needed to handle the day. I had a ride to and from the venue, plenty of water, pain killers if needed and the confidence to stand/stretch/leave for a walk when needed. The last part is something many people struggle with. They will sit in pure hellish discomfort and pain because they feel they must, to not disturb others or to seem normal. Bugger that. It was one thing I’ve really taken to heart and continued since the pain management course, listen to your own body and do what you must. Honestly no one really takes any notice when you stand up and do some gentle stretches. I’ve even had people tell me after meetings they wished they had joined me.

So off I went, armed with my usual assortment of pain management tricks but it wasn’t going to save me completely from Fibromyalgia. Around 3 1/2 hours into the workshop the fatigue started to kick in. My eyes started to close involuntary. Terrified of nodding off where I sat, I quickly stood up and moved to a wall. Though standing helped me stay awake I was constantly fighting the urge to sleep where I stood. I fought my body for the next 2 hours. Drank as much water as I could, stretching and standing against the wall, all the while trying desperately to concentrate on the speakers. It wasn’t an easy task. I’m certain I missed many vital things as my head swam on the edges of consciousness. Thank goodness 2 of us were there, as the other lady will be able to fill me in on anything I missed.

Sunday I spent recovering, or I should say asleep. I ached from head to toe, it was like having a bad case of the flu but worse. Today I’m not as tired but my body is racked with pain. Oh the joys of fibro.

Now the fatigue wasn’t something that had just hit me out of the blue. I had been battling the days previous from headaches and fatigue. Saturday was actually my best day. At least I had no headache. Most people undervalue the effects of fatigue. So let me explain the feelings and the complete lack of control of fatigue.

It usually starts with just being tired, my limbs feel heavy. They are often hard to move. Walking, the mere moving of one leg in front of the other is like running a marathon. You seem to exert an enormous amount of energy just to move. When I try to raise my arms, anything above shoulder height is impossible. It is like trying to lift dead weight and the higher you lift, the harder it is to do and maintain that level. Just raising a glass to my lips takes great control and effort. My head feels like gravity has doubled, the weight of it pushing down upon my neck which causes muscle aches and stiffness. This flows on through my body making me want to do nothing more than find the lowest point possible and just lay there. My brain may be alert but is often close to shut down. Thinking, even the simplest of tasks becomes a monstrous problem. Just trying to decide what to drink sometimes can take me 5 minutes. Doesn’t seem possible? Well it is. I’ve been left in tears for not remembering what it was that I had gotten up to do only moments earlier, because the mere effort is exhausting. My children mock me lovingly for fumbling my words because I find it so hard to formulate them correctly. My speech becomes a jumbled mess, with sentences often repeated though I don’t recall saying them in the first place. When it all reaches peak fatigue, I shut down. I fall asleep where ever I am. I have no control over it, it is very hard to fight and often I cannot. Sleep washes over me and there is nothing I can do to prevent it. Sounds fun doesn’t it? No not really.

Because of this I have to be wary of driving. I do it as little as possible because I do not want to be responsible for someones death. This thought plagues me often. I would give up driving altogether if I could, but without proper public transport I cannot. I limit myself at parties and functions. Never too many at once, which can be disappointing for those that invite me. I often have to politely refuse invitations. Thus I miss out on a lot of social contact with friends and family.

The major problem I face is that people don’t understand the curse of my condition. They don’t believe the real effect it has upon my life, the limitations I face. I get called lazy, an attention seeker, a bludger, a liar, a hypochondriac. People shun me, whisper behind my back, ignore my very existence all because they don’t understand fybromyalgia, they don’t understand or comprehend fatigue. To them it is a made up illness for people with mental health issues. Sorry but it is real.

This illness, this condition is a curse to all those that suffer from it. There is not a single part of our lives not effected by it. Fibromyalgia is all consuming, completely evasive in every part of our lives. It leaves nothing untouched. Nothing is spared yet I find it is the most unbelieved illness by the masses.

Oh well, I better go stretch and hope that today I can at least stay awake and cope with my pain.

My heart goes out to all Fibromyalgia and Fatigue sufferers. I wish you all a better day.

Bad day after such a good one

It is after 1am. I’ve tried for over an hour to nod off to no avail. Now in the dead of the night I sit here typing away to distract myself. Have no high hopes of that working either. Grrr it is Monday.

Saturday was a good day. I drove to Melbourne to visit family. Though I know not to trust my GPS, I followed its directions, as I have never been to the address I was heading too. I swear that damned machine is out to waste as much fuel as possible. It always takes me on zigzag trips through suburban streets. I think it has decided I needed to go around as many roundabouts as possible and that I would enjoy the constant jolts from speed humps. A hammer to its screen sounds enticing in moments like this, but then I wouldn’t have any guide to get to my destination. I really need an up to date Melways. At least a map never steers me wrong.

We had a lovely lunch. I had poached eggs on toast with an enormous mushroom. The poached eggs looked like little ghosts on my plate. Wish I knew how they did that. When I poach eggs they never look that exciting.

I did have to ask someone to swap seats with me. It was a little embarrassing but I had no other choice. We were seated at this table that had one long wooden seat, like those at a picnic table. It was incredibly close to the table. I eyed it for some time wondering how I was going to successfully navigate the seat but there was no way I could and still keep my dignity. I would not be able to contort my body to sit without falling over. It was hard enough to sit on the other side of the table with a similar seat, but it was against the wall which I used to steady myself as I sat. I hate having to ask for these changes as no one really understands why. I often get looks from strangers that scream out “check the fat chick out, to big to sit down”. They don’t realise it is because of my back and hip. I try to ignore those looks as much as possible and get on with enjoying the company of the people I am with, even if they share the same looks as the strangers.

After lunch we headed off to look at a couple of markets. Ceres market was very small but a wonderful place to visit. The whole place is organic farming. You can purchase the fruit and vegetables they grow and there is chickens roaming around freely. You can see were the produce is farmed and they have a small nursery. Well worth a visit.

It was while walking around the nursery that the first signs of weakness started. My right ankle and foot was aching like I had sprained it. There is nothing I can do about, so I continued on. By the time we had finished at the second market (which was really just produce and fish) I was starting to slow down. Walking was becoming more difficult.

We then visited a shopping centre. As we walked around I knew I was over doing it. I couldn’t stop. Not when the others wanted to leave. I really wanted a break but convinced myself going back to the car would mean a rest on the drive back to my relatives home. It really wasn’t.

I decided to drive one of them home to another town just over an hour away, which would mean my trip home would be around 2 hours instead of 45 minutes. That rotten GPS decided I needed more roundabouts and speed humps. I zigzagged all across the suburbs making the trip to drop my relative home last almost 2 1/2 hours. Think it is time to trash that infernal device. Honestly it is possessed and out to kill me, via a heart attack from the stress.

I rested an hour before heading home. My whole day trip lasted 13 hours. I was tired, very tired indeed but it wasn’t until Sunday morning before I knew the toll it had taken on me.

I couldn’t get out of bed. My limbs felt like they were encased in concrete. It took great effort to finally get up. Walking was difficult. Every step was slow and painful. My hip was screaming at me. It took me 2 hours before I had the strength to shower. Standing more than a few minutes was very tiring. Even lifting a glass to my lips felt like a monumental task. Not only was I suffering with fatigue but I also had to deal with my body locking up. This meant it was very difficult to bend. All the normal movements for a person were unavailable to me. No picking up items from the floor. No bending to pat the dogs, or stirring a pot on the stove. Toilet breaks were a nightmare. Trying to sit down or clean oneself took a lot of sheer determination and time. Try it sometime. Just pretend you have no movement in your torso. It isn’t as easy as you might think.

I sat down to watch some tv in the evening. I couldn’t stand the weight of the cat on my lap. It felt like he was crushing me. I had to ask someone to remove him. Which I might add he didn’t like. Stormed off in a huff at being removed from his comfy spot. I had my legs raised but after I went to remove them from the chair, I realised I couldn’t move me right leg. I was straining just to lift it a few millimeters. It was so frustrating. Thankfully my son noticed my distress and got me what I was trying to get up to fetch.

My daughter tried to hug me but I had to ask her not too. A simple hug made breathing difficult. Just trying to breathe while someones arms are across my chest inhibited my ability to breathe in. It was like having my chest tightly bound.

I was so slow walking around a snail would of bet me. It was causing a lot of frustration.

People could see I walked incredibly slow and every movement was calculated. The the sheer exhaustion I felt, the fatigue, the battle to stay awake, the feeling of heaviness in my limbs, these things cannot be seen, only felt.

I wouldn’t wish it upon anyone. As I have said before, Fibromyalgia sucks.

2:30am Time to try sleep again.

A Day in the Life of Me…..

Well where to begin?

Perhaps its best to say my day starts with a cat peering into my face, pawing at my nose, as it believes breakfast should already be served. The purring gets louder as the hopeful kitty realises I’m opening my eyes to the day.

If it is a good day, I stumble out of bed, wake the kids and feed the very persistent pets. If its a bad day I crawl from my bed, hobble around to wake the kids and hope the animals can wait until I find the energy to feed them. Needless to say there is a lot of meowing and whining on my bad days. If only the pets could feed themselves.

I’m always tired. Every single day. Fybromyalgia sucks. I try to eat breakfast every morning regardless of how I feel. Depending on how shaky my hands are depends on what I have. The usual is toast and coffee. A good day means I can slice tomatoes and a little cheese, plus have a hot coffee almost to the brim of the cup. Bad days is jam if I’m lucky with warm coffee in a mug only 3/4 full. Some days I skip the coffee altogether and opt for half a glass of water. Ever tried to drink when your hands tremor so much it is hard to get the cup to your lips? Lucky I have a sense of humor as I suffer this regularly. Hence the reason I don’t get dressed until after breakfast. The upside is I’ve gotten really good at removing coffee stains from clothing.

After dressing, which comes with its own set of complications, it is time to start cleaning the house. This is done in short bouts depending on what needs to be done. For example I might dust the house then rest for a little while before vacuuming. I never vacuum and mop in the same day. Dishes and washing clothes is usually done in the afternoon. Then I cook dinner. I have become the Queen of half hour meals. The problem with that is, the constant comments of “stir fry again? YUCK!” Hmmmm, perhaps it is time to teach the kids to cook.

After another rest it is time to feed the animals, load the dish washer and hit the shower. If there is clothes to be folded and I have the energy I do them. Otherwise I hit the computer. Online news sites and games have become my past time.

Are you bored yet? I am and this is my average day. It doesn’t detail the pain levels or fatigue as that fluctuates. I may do a little gardening (which is hilarious if you could only see how I achieve this) or typing. Some days I just read a good book. Others I may have to go back to bed as I cannot stay awake. I do try, but I just fall asleep sitting. Yay!!! Nanna naps in my 40’s.

Needless to say my average day is one of survival. Everything is done in metered sessions as not to tire me out completely. I take a walk when I can, shop when I’m able and visit family and friends when I can actually stay focused. Nothing worse than people getting frustrated with you when you ask them for the umpteenth time “sorry, can you repeat that?”

My every day is little bites of time. To garden I have to forgo any house work, to take a walk around the botanical gardens I have to get the kids to cook dinner. To knit, draw, paint I need steadier hands. To read I have to be able to focus. To write I have to be able to stop and start many times.

As I said, fybromyalgia sucks!

Fibromyalgia – Better Health Channel
Fibromyalgia is a condition in which people describe symptoms that include widespread pain and tenderness in the body, often accompanied by fatigue, cognitive disturbance and emotional distress. Symptoms of fibromyalgia can vary from mild to severe.