Chronic Pain Poem by Unknown

Chronic illness sometimes is unseen by others.
Others cannot feel what they cannot see.
So if sometimes I look well, but I tell you I am in pain
please do not judge me, I wish I “was” well again.

Illness is not my choice it’s what life dealt to me.
For you to disbelieve me or doubt me, breaks my heart.
For you are my Family, Doctor or even a Good Friend.
Must I earn your “trust” all over again?

Chronic means on and off but always there
Today I may be able to do something, tomorrow maybe I can’t. I have to try hard to work within my limit.
Or the next day I may wind up at the clinic.

Funny how when you have a chronic illness and you finally adjust. You find that it has led to another and you must handle that too. Sometimes you have two or even more,
oh my what a chore.

At times, I have mood swings I cannot control
I may snap and yell, well this I am told
If I do I am sorry, but please understand,
I’m not angry at you, I just need a hand.

I try to do what I’ve done before
perhaps even a simple chore.
But then I find that my muscles don’t seem to work anymore.

I want to be that parent, grandmother or friend
the one I “lost” when this illness came upon.
The one I tried to be when I was there for you.
The one I “was” when I was able to do.

Every time I say no to you, don’t be angry at me.
Every no I have to say reminds me
I am “not” normal anymore.

So please, don’t doubt me, just try to understand.
It was not my choice! It is just God’s Plan.


Chronic Pain

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge ( place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.


Guest post from Adrienne McGuire a fellow EDS/HMS sufferer

My EDS Story
I’m 37 years old and was diagnosed with EDS type III just last year. I have two children who are both very active and require a lot of physical and emotional attention, which can be a real challenge when you’re suffering, which I have been for most of their lives. I saw many different doctors over the years, all of whom proclaimed that they could find no reason for my pain. Some chalked it up to anxiety; others called it fibromyalgia. But I knew there was something else.
Hindsight is 20/20, isn’t that what they always say? Looking back now, I can see that my EDS problems started when I was young with several fainting spells and a distinct inability to withstand any amount of heat without passing out or nearly passing out. I had horrible shoulder and back pain as young as 13 and have ever since. My neck has been in and out of spasm since age 20. At age 22 my entire body began to twitch, which I now know was from overuse. By 25, my legs were constantly aching so badly I was in tears often. And that was eleven more years before my diagnosis.
Last year I had to say goodbye to the old me and say hello to the new me with limitations when a rheumatologist told me I have the hypermobile form of Ehlers-Danlos. As I educated myself about the disorder, I realized that the only way to control the symptoms was to slow down. I had to explain to my children that I can’t do all of the physically active things that we used to do, and that was really tough. I mourned my lost abilities to run, hike, carry my kids, and play on playgrounds. I had a mental break and ended up in the emergency room several times. That was 9 months ago. Today, I am moving forward.
Though I lost some abilities, I gained so much in the way of mental strength and focus. I could no longer work as a legal assistant but I became insanely determined to create a life for myself that worked. By pacing, therapy (both physical and mental), trial and error to find effective medications and supplements, meditation, and learning to ask for help, I have managed to look at my life with a positive spin. I now wear silver ring splints all the time and other supports as needed for wrists, knees, elbows and neck. I recently talked to my doctor about getting a wheelchair for long outings. But, overall, when I look at my life now, with a disability, I am so much happier and grounded than ever before.
Adrienne McGuire is a writer, website consultant and wellness enthusiast who abandoned the corporate ladder to create the life she really wanted. Her journey down the road less traveled took her to , where she is now an integral part of the writing team.

Subluxation City!

Until now I’ve considered myself pretty lucky with my symptoms… compared to some I’ve had it really easy, I didn’t subluxate (partial dislocation) and I didn’t dislocate. Now that has changed. I had my 1st sublux yesterday, my right hip joint was sitting very strangely , sort of poking out and pressing against the skin. I could barely put any weight on it and it was just as sore sitting as standing. I’m not entirely sure how it has happened, the only thing I’ve done this week that could have caused it was using the cross trainer at the hospital as part of the pain management course. I really struggled to move it, especially my right leg. I’ll give it a miss next week, I don’t fancy finding out if that was the cause or not.

I’m feeling pretty scared that my symptoms seem to be stepping up a notch and I worry what the future holds in terms of mobility. Even without subluxes and dislocations I struggle enough and need a stick for the very short walks I can manage, if I want to go around the market or take the dog out I’m now using a mobility scooter, which at the age of 39 is bloody embarrassing. I don’t want to get to the stage of needing a wheel chair most of the time. It’s bad enough having to explain why I use a stick, never mind a chair or the scooter. So where does it go from here? will I start fully dislocating? will I subluxate other joints? will I need braces to hold me together or will I just fall apart. I just don’t know anymore and trying to stay positive when things keep getting worse is becoming a major chore.


So my attempt at pacing continues. Today I think I may have cracked it! Woken very early still woozy from the meds. I did my facebook stuff, fed the mudlings and set them to work. Met mum, dave and elaine (my god parents) for a quick brew at a local cafe. Had to walk very slowly, my damn arse is knotted up something chronic, can’t wait for the next injection at the end of the month. Made it home and started preparing a dinner of pot roasted shoulder of venison. I’ve found doing a little bit of it at a time has worked quite well. Sealed the meat and set it aside. Had a rest on my fanatic new zero gravity garden chair. Prepared the veg and stock and popped it all in the oven. Another rest. Did the recycling and had another rest. Prepped the mashed veg. Yep you guessed it another rest. Just the cabbage to do now. I think when it comes to cooking this is probably the best way to manage it. piece by piece, it might take the entire day or at least a goodly portion of it, but it’s done and I’m not to knackered to eat it. hope it tastes as good as it smells!
So today had been 1 nil to sarah versus HMS. Slowly I learn, but surely too.

Having a great week!

So, in the lead up to Christmas I was suffering with a nasty neck spasm that refused to bugger off no matter what I hit it with! Over the xmas period I managed to see my GP at the peak of this spasm, she took one look and put me on diazepam (valium for you old schoolers) 5mg 3 x day. It eased the pain almost totally, but I still woke up every morning with the familiar sickening feeling that the spasm was still there. I woke on the 8th morning with NO pain. It was awesome! I can’t believe the difference in how I’m feeling now compared to before. It still threatens, but I just hit it with a half dose at bedtime and so far it’s keeping it from coming back.

Even my SI joint is behaving itself at the moment, maybe a coincidence, but I think it’s relaxed the general spasm in my buttock that pulls it out of place on a regular basis.

Life at the moment is feeling good, it’s amazing just how much extra energy #spoons you have when you are not fighting pain 24/7. I’ll keep my fingers, toes and anything else that I can cross, crossed that it stays this way. I almost feel “normal” I definitely feel more human.

2011 has been a mixed up year!

In the space of a year I feel like my whole world has changed beyond recognition.
I’ve had lower back problems since I was young, mostly when queuing or playing hockey/vacuuming, but I assumed that everyone was the same and just worked through it, so I must just be a lazy cow or a wimp and generally avoided it when possible.
I’ve had neck pain and associated problems for nigh on 12 years after a stupid (on my part) accident when I headed, what I thought was a huge inflatable ball. Obviously this was not so, after coming round from the initial impact I was imobilised and sent for an Xray, which revealed everything was A-OK. NOT!!! spent the next 12 years with regular lock ups when I couldn’t move my head. Tried every treatment known to man and was never fixed
A few years previous to the neck injury I got IBS this was in my early 20’s. It was horrible for while, then calmed down to a manageable level and life carried on.
In my 20’s I realised my very cold, blue or bright red, sometimes numb feet and hands was not normal. I gave up smoking for a time but there was no improvement.
Various other weird little things like some local anaesthetics not working at the dentists, everything worse the week before a period was due, easy bruising, feeling faint when standing up too quickly and seeing stars and feeling tired all the time, my forgetfulness I never connected to any of the other problems I had. why would I they were all completely different and didn’t seriously impact my life.
5 or so years ago while washing windows on a milk crate, I took a small fall and rolled around on the grass, giggling and hoping no-one saw. I didn’t feel as if I’d done any damage and got up and carried on. a week or so later I was having some buttock and lower back pain, which seemed to get worse the more active I was. Over the next few years this pain steadily increased until I was at my wits end and hardly able to put one foot in front of the other. I tried physio, chiropractors, osteopaths, physio again, but nothing helped and it just got worse and worse. Eventually I saw a GP who didn’t fob me off, prescribed me some kick ass pain killers and got me a referral to the pain clinic. They offered me HOPE.I got my 1st steroid injection to my right Sacroiliac joint and facet joint in June 2010. It was wonderful! the relief was immediate and I could finally walk my dog again, work was easier and I could join in family walks and trips out again. The relief lasted me 6 months.

A few months after the injection, my neck flared up again, but it was different this time. My right finger and thumb were numb, I had strange sensations like insects landing on my skin, or the feeling of a hair tickling across my skin. I had pins and needles almost constantly and if I laughed, sang, sneezed, coughed, in fact any sudden or violent movement caused electric shocks to run down both arms. I couldn’t find a comfortable position anywhere. I saw a GP who sent me for an urgent MRI (6 week wait) It was another 6 weeks (Jan 2011) before I saw a neurosurgeon to go over the results. Diagnosis 3 prolapsed discs. Spinal stenosis and osteo-arthritis! Fortunately the worst of the symptoms had gone by then and the worst was over. I declined a cervical spinal fusion operation, unless/until it was absolutely necessary.

With February’s arrival the steroid injection had worn off. I had worked the half term break and had wired in 160 pairs of headphones to 160 PC’s. The repetitive strain on my back put me out of action for a week. GP put me on seriously kick ass painkillers and valium for the spasms. I had 4 months of hell before my referral back to the pain clinic came through and I was put on the list for another injection. it was another 8 weeks before it came through for the 1st of August. I had also had an MRI on lower lumbar to see what might be giving me such gip. Turned out to have a bulging disc there too. However I didn’t believe it that was the cause of such pain and inability to walk (was dragging my virtually dead right leg around) I felt sure it was the SI joint itself. A couple of weeks later I was back at the pain clinic to see an Occupational therapist to see what I could do to manage, however she was off sick, so I saw a physio therapist instead. who asked a few question, got me to contort myself a bit and diagnosed me with Hypermobility syndrome. She gave me a print out and organised for me to do a back strengthening class that never happened.

Since August I have felt like there was a reason for ALL my weird quirks. I joined the HMSA organisation, read their website forum extensively and generally tried to find out as much as I can about this rare collagen disorder. I found out it’s hereditry and this explains a lot of the health problems the people on my mum’s side of the family have endured. It’s the sort of thing you might never know you had, until one day BAM you start falling apart at the seams (quite literally sometimes) I fear all my girls have it, they all have various symptoms of it, but knowing they are young enough to protect themselves in the long run from the really nasty side of it, eases my mind some.

I saw a rheumatologist in dec who agreed with the physio’s diagnosis and has organised specialist spinal stability physio therapy. I’m glad I’ve got a name for this condition, I no longer think of myself as a lazy hyperchondriac. I’m now a bendy zebra :O)

Here’s to a healthier 2012.