People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain.
This description is the same for me.
I am telling the truth when I say I am hitting a brick wall with my experience of ehlers danlos right now.
In my title its says something about living well with a chronic condition.... the truth is I am not living well right now.
I feel as though I am sliding into an abyss of pain -
Most of the time whilst I do chat about it on this blog I realise I never describe it. Attending a pain management course many years ago - others seemed proficient at describing their pain. Not me. My pain is so much of me I suppose I don't seem to have adequate words. I want to shout out loud - can't you see it - why doesn't it show. This is my normality. I am pain pain is me.
Do You See What I Feel?
I was reading a thread in an on line community which was debating the difference between EDS and Hypermobility Syndrome. It seemed as I skimmed the very long thread that there was much debate about EDS versus HMS.
Do you know what I am sick of all of that crap.
Flashing at me from the computer at my GP Practice it states - 'This patient has hypermobility syndrome' despite the fact that all those years ago I was actually diagnosed with EDS Type III now known as EDS hypermobility type.
It doesn't matter anyhow as gp's know the patient with whatever type they think you have, present with pain as a predominant feature in what probably is a heart sink patient. If they bothered they would know that I have many overlap/mosaic features of EDS and if the terminology of all of that is wrong please forgive me.
I have thought on occassion that I should ask for a bioposy but where in actuality would that get me apart from the obvious implications on the longevity of my life.
It would be good if the money were invested to find the elusive gene related to hypermobility type (formerly k/a type III). But the reality of the funding being available anywhere in the world for such a rare and misunderstood condition. Where even amongst those Professionals who do have a special interest there is much argument between themselves worldwide about even an appropriate name. I suppose if the gene were identified that
Do you know what, right now all that is just talk because if someone suggested I had a morphine pump I would say yes please and bollocks to actually ever hearing the words ehlers danlos again. Make of that what you will.
It doesn't matter how much I type really I could just repeat over and over
pain pain pain pain pain pain pain pain pain pain pain pain
For the past 48 hours I have been having the type of pain even I consider intolerable. In an area of the body that one doesn't really bring up in company. How does one say - I am having mind blowing spasms in my lower bowel - I suppose anus would be the best way to describe the area. I haven't been out of the house now for two days - my spouse wants me to go the doctor. If its not gone by the morning perhaps I will - this is not IBS by the way, I have had it before and the GP was dumbfounded, she was kind and supportive which is always nice. If anyone else with EDS gets this please comment and help me out. The only thing that helps is valium.
When the spasm starts, it makes my whole body tremble, I sweat and pass out. I come round slowly and if I can manage it, make a cup of cammomile tea and take a valium. It is often worse at night and unable to wake spouse at all at night (regular readers will know that due to his epilepsy meds, support at night is unavailable). Pain at night as carolyn writes on her blog (link below) seems worse, more isolating somehow.
Last night I nearly called an ambulance. Eventually the first of many spasms abated. Today I have slipped in and out of troubled sleep - I know I should go to the doctor. The cause of the spasms another unknown. I am practically too exhausted by this episode to even explain to a doctor the severity/nature of the pain. To anyone who has had children the pain is on par with that.
Because as I have said already - I am much used to pain - If I didn't have EDS would I be rushing to the doctor?
I know I should go.
How do I explain that I feel that at the moment my bendiness is on the inside as well as out. That my guts have twisted and until they stop it this will continue. I know it could be diverticulitis or other gut/colon related conditions. Its just I am not sure I can actually cope with something 'else' as well. So for the moment I am thinking - its just a motility thing - it will pass.
So today I have used my blog completely selfishly I have moaned and moaned.
As an aside, does anyone else ever get so that they actually are in so much pain or feel so ill they just can't get it together to go the doctor?
The spouse wants to call one out.
How can a doctor come in here - its too fucking untidy.
I want to shout at spouse and teenagers - if you care - clear up this fucking mess. Husband got in from work and was dog tired - I understand but does he not see the mess?
Teenage daughter got shouted at - I admit it I was completely shitty to her. She left to see boyfriend having added to the mess.
Teenage son - bless him stayed out til nine, then rang and came in with nurofen express wondering if it would help.
I love them all so much but want to shout if I had the energy -
CLEAR UP THIS FUCKING HOUSE.
I hate it that they see me as being ill all the time.
I want to be normal.
So there it is my day - pain pain pain pain pain pain pain pain pain pain pain
But right now - if the volcanic ash would let me I would happily get on a plane to Switzerland and do the right thing. The only thing preventing me is lack of cash, the fact that my mother would see just how untidy the house is and my family would never forgive me.
So I can't even resort to that.
Mostly when I write posts like this I am too embarrassed to hit publish but today this will turn into a post.
I have made a decision.
This can't carry on its time to make a plan -
Time to return to coping and living well with a chronic condition.
My guess is patience will have to feature heavily in the plan.
(Please accept my ramblings today and appalling grammatical/spelling and layout - that pain thing makes me lazy)
carolyns blog - from which I found the pain statement at the top of this post
10 comments:
Oh Achelois, I wish I could give you a huge, if gentle, hug through this damn impersonal computer screen. Rant and yell and scream until you're hoarse if it helps, you are damn well entitled to it. Screw the trolls, tell them to 'F' themselves. Sometimes you get to that point where enough is enough, where you need to curse the universe.
You don't need to have the perfect words or the best grammer to describe what you are going through. Often that sounds like contrived crap straight from Dr Phil. I'd say you are more honest and raw than most and although I'm sorry for what you are going through I am glad you pushed post.
I understand the avoidance of the doc thing. The need to not be told you have yet another thing. The need to not explain it all again. My husband tells me I cut off my nose to spite my face, that I'd rather sit at home unable to move than call a doc. Sometimes trying to organise the appointment, to go through it all again is just to much to deal with on top of all the shit you are already dealing with.
I wont tell you to go to the doc, because I know in your position I would tell me to stick it, but I do hope the pain subsides and that if it doesn't you'll reconsider. Reading you say it's bad means that for the rest of us it would be crippling, which really does mean a need for a doc.
I think sometimes we become so immune to illness/pain because it's permanent. Our ability to perceive severity or danger is skewed, it has to be to survive day-to-day but it can also be problematic. Sometimes it's not until somone not in my shoes is shocked that I realise how sick I am, otherwise it's all white noise.
Words are useless somedays, so all I'll say is I'm thinking of you and if there's anything I can do let me know. Happy to be the wall on which you vent.
Michelle xxxx
Gentle hugs Achelois, you know I know this. And I worry about how much worse it's going to get.
xxx
Also, thankyou for the comment. Am running short on Spoons so haven't been replying. Should probably fix that. x
its a shit place to be. i really dont know what to say, someday i find it pointless to even cry because i know that the act of crying is going to make me feel worse for days.
i get not wanting the tests. having tests at present and i dont know why i bother.
thinking of you. xxxx
Aaaah Achelois my sweeting, I am so pleased that you hit publish. I was nodding my head in recognition of your pain and then smiling at the thought of your Mother seeing your messy house heh.
The Spouse has just been prescribed slow release morphine patches for his pain, His hips and lower back had gotten so bad that he couldn't stand for longer than five minutes.He started on 5mg but they didnt work and he is on 10 mg patches that last a week.
Of course once he was sort of pain free he started to push himself again using spoons willy nilly.
Young Isaac has terrible trouble doing a poo. V says that he cries for ages as he is trying to poo, and it isn't because he is constipated we think it is because he has bendy insides. The spouse has trouble as well but no pain in the bum for him it just takes a long time.
I wonder if now that you are approaching menopause that you will really start to fall to bits for a while as all those bloody hormones run amok. Then it will all settle down again.
Go to the Doctor Woman and get yourself sorted. I just had an internal examination and am waiting for a colonoscopy, fun fun fun. I think they should do a scan to see what your bowel looks like.
Can you get slow release morphine patches?
I am pleased you pressed publish as Bendies of the world need to unite and share symptoms because for the most part the doctors are bloody useless.
Giant hugs to you my friend xxx
I don't want to add misery to misery, so I will ask you one thing that you have asked me so many times before: Have you told them you need help? I don't know how your insurance works there, or if you have it available, but I know here people can get "home health aids" that cook, clean, organize, shop, and just plain help out every couple of days. I'm sure you, a seasoned EDS veteran have already thought of that route, but it breaks my heart to hear you cry out for help (pissed or not) and not be able to help you like you have me so many times. =) I really hope you get some relief very very soon.
achelois
I'm so glad you've given us the true picture of how horribly painful your life is right now.
I see this post as a cry for help. Your readers can only do so much to help you and words won't solve the problem. You are in need of treatment and you need it now!
Not tomorrow - NOW!
The only time I've ever experienced symptoms like you describe in the lower bowel/rectal area, was when I developed a bowel abscess. Acute diverticulitis was the cause and this was diagnosed by a contrast CT scan. It responded well to antibiotics and did NOT require surgery though it did involve a stay in hospital as IV fluids were all that was allowed for 5 days.
As I'm sure you know, diverticulitis is almost to be expected with EDS due to tissue laxity.
If you remember, I was diagnosed with an unusual form of colitis (collagenous) last year. I was prescribed Asacolon (contains mesalazine) and it's given me enormous relief from bowel pain. My bowel has never felt more comfortable or functioned better. Asacolon is a gastro-resistant anti-inflammatory drug used to treat and prevent inflammation of the bowel wall. The tablets pass through the stomach without dissolving and act locally on the colon and rectum to reduce inflammation. This drug has not only treated the colitis successfully, it's acting as a preventative as well against developing further bouts of colitis/diverticulitis.
I don't mean to lecture you but please believe me when I say that help is available when you make that leap and ask for it.
In the meantime, I'm sending huge pain-relieving vibes your way.
Oh sweetheart. Big, gentle hugs. I understand, we all do here.
I often think that the HMS v's EDS debate has done more damage to hypermobile people than anything else. Sad for something so well intended. I personally do think there is a difference between HMS and EDS III but that most of the ppl who actually have HMS never get anywhere near the bendy specialists so it skews their perspective of the range. Not that that matters a jot now.
Is the pain like someone is stabbing up your rectum? I'm guessing from your comments on my post that you are concerned it may be related to spinal issues as well as bendy gut issues? I find when my spine is bad just lying on my back on the floor with knees drawn up to my chest and letting gravity do the trick will help if the spine is not in it's best location. Have you checked whether your coccyx is in place? I know you know what you'll have to do, but sometimes just the act of checking will realign if that's the case.
With doing the new physio it's all about making those neurological patterns work, like the shoulder retraining stuff you know how to do but for the whole body. We are finding that the best effect comes from doing the exercises, but that if the body is too exhausted, running through the mental processes of the exercises makes a significant improvement. Can you try running through the mental processes of proper pooping and see if that helps at all?
A long time ago you gave me invaluable advice about not trying to fight too many battles all at once. It's time for me to return that. One step at a time. Sod the house, sod the medics, sod everything except for focusing on yourself, even if only for a day or so. I find when the pain is horrific I detach from my body to bear it, but we sort of need to reattach to work out exactly where and what the pain is. After all, until we can tell the doctors what and where they can't do the how, why and what to do. That little voice inside is telling you what's wrong and what you need to do, trust it. You know your body best of all.
Could the valium be contributing to this spasm cycle? I find it v useful in occasional low doses, but more than a dose or two in a day and spasms start up to try and compensate for the relaxation elsewhere. It's most unfair. Are you doing all the basics like lactulose, eating little and often? Sometimes with a bendy gut the body needs topping up with food to help things come out the other end, bit like stuffing loo roll into the inside of a tube...it won't come out the end until enough's gone in the other.
I fear I'm rambling now and not being of any use so I'll shut up. Love, hugs and hope for a better day tomorrow. BG XxXx
The pain has you in its grip - and yes, the tears are pricking in my throat for you Achelois and I wish I could rush over and clean your house and drive you to your nearest emergancy dept. - but ultimately, YOU are the one in charge of yourself. So (taking deep breath) sorry if I sound like an unsympathetic 'effing bitch', but get yourself to a doctor NOW, or as your very worried, helpless feeling husband suggested, get him over to you. Failing that, phone for that ambulance. DO IT!
Your family can't help you if you don't allow them to. And as long as you stay at home suffering, you are not only treating yourself badly but them as well.
Look at your son, worrying himself sick enough to come home with over the counter pain relief - anything to help relieve his mum's suffering..
As for the messy house, well house cleaning needs an orderly approach. If you can type this post then you can type out a list (keep it realistic) for your family, of things that need to be done and pin it to the kitchen door... and then stop worrying about it. Leave it.
And if you don't know how to explain to the medics just how much pain you are in and how fed up you are and how desperately in need of strong pain relief, print out this post and push it into their hands! I assure you it will do the trick!
Oh please believe me, I am not unfeeling towards you. But how you carry on living from this moment on is in the end UP TO YOU. So...?
Achelois,
I am new to your blog, and new to EDS, but I am not new to pain. I understand the suffering. You have lived through far more than you should have too... It is not fair, and not right that your existence is tied to suffering. I am so sorry. Love and hugs to you. Please update us on your status.
Oh Achelois, I am so glad you hit PUBLISH, that is why we are here... you need to go see the doctor, hell print out your post and hand it to him or her and say this is how I feel? Would that help? If you don't want him to know your website copy and paste it elsewhere but let him know.
I am so sad for you...you are so gentle, and the house is not the problem it is misdirected anger and perhaps a distraction (maybe a good one) but you still need to take care of you and your pain.
You need help. Get some...and let us bloggy friends know how you are, yes?
Who cares about grammar, I don't always check. It's more about what came out of the heart. Grammar police stay away.
Keep publishing the raw stuff, we need to hear it.
Sending virtual hugs...
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