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.

Been awhile

So it’s been awhile since my last post. A fair bit has happened in the interim. I managed to get some free chiro courtesy of work. Don’t know if it’s been a bit too much really. 1st adjustment was great, the 2nd exacerbated nerve pain in my arms and the si adjustment has sparked of sciatic pain in both legs. Am now taking pregabalin which is working great, but leaves me feeling pretty drunk :o) back on valium for the nasty spasms that I’m getting a lot of.
It would appear that hospital appts are like buses. I feel like I live at the bloody place. Have a corneal ulcer in my right eye, it’s only a little one but they take it very seriously and are checking it thoroughly. I have 3 appointments coming in the next week. Physio on thurs. Rheumatologist next weds and pain clinic the day after plus another eye follow up on the fri. To say I’ll be knackered would be an understatement.
Still struggling at work, I’m so tired by lunchtime that I’m neither use nor ornament in the afternoon. Fortunately it’s pretty quiet so I can get away with it.
Oh well feeling pretty woozy so will finish now and try to remember to post more often

Bendy week again

Struggling again! Stupid neck is playing up big time.its been building up over the last few days and peaked today. At least I hope this is the peak! In spasm all on the right hand side of my neck, right down into my shoulder and in between the shoulder blades. hurts to lift my right arm. Still getting sciatica running down both my legs and my knees are sooooo sore. The valium and pain killers are doing jack.
A colleague made a nasty comment yesterday, well not nasty exactly just thoughtless I suppose. But it left me feeling like I lost some support. Obviously sick of hearing me moaning, so I’ve made the decision not to let him know how I’m feeling anymore.
Sciatica was so bad last fri that I took the day off, as a result I have reached the heady heights of 13 days off in a rolling 12 month period. Which means I have to be subjected to another case review re my sickness absences. If I reach 20 days in 18 months then I get a formal warning. I can’t see how I can avoid it! Oh well we should hear what the restructure of the staff will be soon, bet I’m in the firing line anyway. really wish I could cope, but there is just too much going on and my head is just foggy and I can’t see past the pain today

I Feel So Weird

Friday was the last day I took Tramadol. I thought 6 weeks of tapering my doses would be ample and easy to drop back to co-codamol when the time came. OMG who was I kidding!!! Me that’s who!
Saturday was good, up to a point. I know doing some light exercise is meant to be especially helpful when you are withdrawing from opiates, so I used up Saturdays spoons (see last post for spoon theory) and managed to bloody injure myself walking the dog.

Was feeling with it and quite lively, so I strapped up my knees and headed for West Green. Beep was walking really nicely with me at my speed. I was really impressed with her and feeling positive. Then we arrived at the field, there were a couple of other dogs about, but nowt I couldn’t handle. Then… the strap of my shoe broke and I had to sort of slide my foot along to keep it on my foot. Rang home to see if someone could bring me a replacement, but no-one was available. Hey ho, not to be deterred I entered the field and was attempting to remove Beep’s lead, when a handsome black lab started to approach. I politely (I thought) asked the owners to call the dog back, knowing Beep would go ape as I still had her on the lead, they sort of laughed and half-heartedly called the dog, who just ignored them and approached regardless. I shouted at them to call the dog away and was starting to panic, when Beep lunged and yanked my bloody arm out of my socket… ouch much!
Feeling very sorry for myself I hobbled out of the field, I felt sorry for Beep too as she hadn’t had a run, so decided to try and turn a negative into a positive and took her to the beck across the road and kept an eye out for them leaving. As soon as they went I returned to the field, determined to finish what I started. Which I did, with great aplomb I might add! Got home to find the dreadful news that a really good friend had died, so very sad for his family. RIP John Lees, despite not seeing a great deal of you recently you will be missed x

I was up late on Saturday trying to stay up, waiting for Mol to come home from a gig in Rotherham, couldn’t manage it and gave in at 2am, fully expecting to sleep til dinnertime so it wouldn’t matter too much. No such luck, amazingly for me I woke up before 8 and couldn’t doze off again. Felt pretty rubbish, headache is still giving me jip and I’m noticing other withdrawal symptoms. In particular weird flashes, like when someone makes you jump or you get caught doing something you shouldn’t be. These are pretty bothersome, I know they are a result of not getting the SSRI from the tramadol. I remember the feeling well from coming off Anti depressants after Post natal depression following Rose’s birth. I had to taper off them very slowly… Fortunately I have St Johns Wort in the house, for just this sort of thing and took a dose, which works for a few hours, but seems to have a short half life. (leaves your system pretty fast) Anyway I had way less spoons than normal to start the day with and I felt dreadful, had cold/flu type symptoms and shivering followed rapidly by hot sweats all day (rinse repeat ad infinitum). My whole body ached and every joint felt sensitive and sore. Had absolutely no energy what so ever. Managed to go to the supermarket with Mol to get the weeks pack up supplies and something for dinner. Got home and needed a bath and a sleep just so I had the energy (a spoon) to eat the dinner Mol lovingly prepared as I was just too knackered to do it. I did manage to dish up though!
I hate this feeling of not being able to even feed my own family, Mol (especially) and the girls look after me so well and I just feel I’m letting them down all the time and they really don’t deserve it.

I crawled off to bed just before 12 and ended up laying there for an hour and half, with no sign of sleep. My guts were spasming and my hands and legs felt really weird, I couldn’t keep them still or find a comfy place. I didn’t want to disturb Mol so I got up and had a drink and read for a while. Still felt very strange, then it dawned on me this was yet another withdrawal symptom, my body was crying out for some opiates. I refused to give in and take a tramadol, but knew we had 1 co-codamol in the cupboard (for Mol this morning) and even though I knew I would be taking from Mol I knew I had to take it or I wouldn’t be able to work today. It worked anyway and I finally succumbed to the land of nod around 4 am. Tired much!

I see my GP this afternoon and feel sure she will be able to help with my various probs and get me a referral to a rheumatologist so I can get an official HMS/HEDS diagnosis and have the tests I need to be on the safe side and get proper physio help.