Two Steps Forward, One Step Back

I had an amazing Center Parcs Winter Wonderland Holiday last week with my family. It was just what I needed. I went down slides, ignoring the ‘do not go down this very fast slide if you have back problems’ signs, I rode a bike, I walked, I skipped, I felt better than I have for a Very Long Time. We ate lots of food, drank only a little wine (have gone right off it, oddly) sat in front of a wonderful open fire. The weather was freezing, producing a lovely glistening coating of frost over everything – very magical. We swam outside in the dark and fed ducks bread in the mornings on our patio.

I returned relaxed, walking normally, and everyone has commented at work how much better I look, how freely I am walking. I have been smiling, beaming ‘yes, I just needed to let go, I needed to stop worrying and just enjoy life!’.

So, with my upward positive attitude in tact, I headed off for a swim last night, and did 20 lengths, followed by the spa and a quick turn in the sauna. Brilliant, felt great.

At lunch time today I left work due to increasing back pain, and  the now regular flu like feeling that I get when my back is about to ‘go’. My boss agreed to get home and take meds to avert any major disaster.

I am now in bed, unable to stand straight. I just know that as soon as I stand straight, the searing pain will go through my back and legs and my back will, once again, be fucked. Excuse my language but that is the best word I can find to describe it right now. I now know the signs, and the tight deep pain along with the flu symptoms (my blood hurts) which seem to start in my back means only one thing.

I took my normal dose of 100mg slow release tramadol this morning but I don’t want to take another Tramadol through the night as I will be wired and won’t sleep so I have taken the dreaded 60mg Co-Codemol. Shame I have no diazepam left, which is what I ideally should take to stop the muscle spams in their tracks before they start.

Only yesterday I was skipping into work. I only had to do tomorrow before christmas leave, I am not sure I can make it to work for that final day

is this ever going to end? But on a good note, I have gone almost 6 weeks without a proper relapse, which is a good amount of time.

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Maybe Wine CAN Cure Back Pain…

I am often described as forthright, activist minded, quick acting, decisive. I am also sometimes described as impulsive, hotheaded, impatient, bull-at-a-gate-post (my mum loved that expression). I am all of those things. Often, they get great results, but sometimes you can’t sit around having committee meetings to make decisions. Sometimes, you need to be decisive and just get on with it. R and I are quite different in this respect. He likes to chill out, have a cup of coffee and a chat, forget about, return at a later date, and talk some more, but when it comes right down to it, struggles to make the decision. This is one of the ways we are very compatible. He helps me slow down a little and encourages me to take time and think, I speed his actions up and encourage him to make decisions (or, make them for him).

I have felt uneasy about how much medication is running through me and for how long and continually seek alternative ways to deal with my pain. I worry about how much damage diclofenac is doing to my insides and my joints. I worry that my emotional wellbeing is being eroded away by artificial chemicals that have forcibly increased my ‘happy chemicals’.

I have never been an adrenaline junkie or a seeker of drug highs. I like to be in control of myself, of how I feel, how I act. This has become more and more noticeable as I have grown older. I don’t like things being ‘done to’ me, I need to be the person at the steering wheel of my life. I am happy to have some-one map reading, but I have found, in relation to pain medication, the medical profession are pretty hopeless map-readers, they can have people driving around in circles.

In this decision I have just taken, my cautious considering husband is fretting, as my impulsive (decisive) mode had engaged. Although in agreement it needs to be done, it does not sit well with him, but even he knows that these chemicals cannot be good for me for this long.

So In the midst of a reoccurrence of back pain I have stopped both amitriptyline and tramadol.  It was not a deliberate act. well, not completely. Last week I stopped the nerve blocker so I could drive and stop walking into things, this week I threw up for so many days I could not take my tramadol doses and chose not to start it again.

My GP sort of knows I have stopped the tramadol, but, temporarily only. She has prescribed me codeine instead as I prefer this for acute pain, but hoping it will help with the withdrawal of the opiate side of the tramadol at least and I can reduce this easily (i hope). Just not the double serotonin drop. I have been reading about the experience of others in withdrawing from Tramadol and it takes me right back to my whole reason for not wanting to start it.

To say I am not scared would be a lie. The next few weeks I suspect are going to be very tough. I am actually now just waiting for the withdrawal anxiety and restlessness and angst to kick in. I have not read One Single positive story about withdrawing. There is Not One Person in the ‘net who has got away with it lightly. So there is absolutely no reason I will escape it.

Crazy I hear you say. And you are probably right. And, if you are in my position, please please don’t copy me. See your GP and do it properly. Like I explained at the beginning, I am hotheaded. I don’t want to be persuaded out of it by the GP, or have to titrate down and just prolong the inevitable agony. Now I have made my mind up. I am going to do it. I have to do it. I cannot be a prisoner to this awful medication any longer.

I will manage by exercising (when I am over this acute phase) I will have saunas at the gym to help me detox. And by eating. I have lost my appetite for so long I have lost just over 1 stone in weight. YEY! some might say, but I only weigh 8st now. I miss food, especially as R is a trainee chef, that is Not Good.

And, I will always have a bottle or two of Pinot Noir waiting to help. I think I am going to need it.

I Balanced My Body!

I did not go to Body Balance last night. I rushed out of the house to cries of ‘but mama, I will miss you! can I come? one more cuddle, and a kiss…pleease? don’t go mama! I have not said goodbye!’ [for the millionth time]. Drove like a maniac the two minute distance to the gym (I could walk but a) that is more exercise, let’s not push it b) it is dark and c) it is going to rain) parked across two spaces like a woman possessed, sprinted (walked fast) towards the entrance to be pipped at the post by three hippy women and as I got to the check-in I was met with a ‘sorry class is full’ as the hippies casually took their shoes off and sort of elegantly tiptoed towards the class, ankle bracelets twinkling. Bitches. That was my class.

What happened next well, I have no clue. I expect it had something to do with missing that mornings meds. After returning home, I joined the family on the bed, for stories, and R put them to bed while I ‘rested’ my eyes. I passed out. Like, actually, no recollection of the next hour until R came up and complained he was all alone.  I could not speak or move, I ‘slept’ until 6:45am and woke with The Most Horrendous Headache, having also missed my meds last night. Tramadol withdrawal is Not Pleasant and I’m not looking forward when I no longer need it.  I have had the shakes all day and my legs almost gave way walking back from the school/nursery run.

I felt so rough, but there was another body balance class at 12:30. I looked terrible, hair was sweaty and yucky, clothes were crumpled, I took the kids to school looking like a fright, baseball cap and long coat on. But I was determined to get to that Class.

And with the help of 3 cups of coffee and some Guitar Hero with R before he went to work, to lift my mood, I did! I had a chat with a personal trainer about parting with £130 per month to get a proper exercise regime going (sod that I can work it out myself thanks) and 10 mins later, I was floating. Ok. I was falling. A Lot. The instructor was brilliant, gave me little shakes of the head which was my cue to stay in Down-Dog or whatever instead of contorting my body into some snake like position (see, I am using the lingo already). I could not even hold my arms out straight without them shaking, but I did it anyway.

And then. Get this. I Went For A Swim. I thought, well, I am here right? 6 lengths of the tiny pool, 15 mins collapsed in the Spa, 20 mins sat in the disabled shower purely to catch my breathe. Well, not purely, I shaved my legs.

Roll on 3pm, I was collecting Winter Boy from nursery like a new woman. My hair had been styled and dried, some BB cream and a little sparkle wake up cream, mascara, lipgloss and I was transformed. Apart from the slight limp from some pain cutting through my hip into my almost numb foot which I was desperately trying to ignore.

Rock On Friday for the next class!  And if anyone is thinking of going (denialandpanic for example) do it. It is brilliant!

Thank you runawaycerbera…

I am writing in response to the fabulous post in ‘comments’ by runawaycerbera on my last post ‘my husband stabbed my leg!’ She has spoken about her own experiences with backpain in such detail, I felt my answer to her was so long and in turn detailed that it should be written for people to easily read. Maybe they will be more aware of how serious a lumbar disc prolapse can be, and what backpain and nerve pain might mean long term if we don’t address it, which neither of us knew before.  Luckily in runawaycerbera’s case it was not too late but for many people it is especially if they experience Cauda Equina Syndrome which is a serious form of nerve damage that can leave you with permanent parasthesia if you don’t get it treated straight away. Check out the NHS website for details if you need more info, it is a really helpful site.

I read everything runawaycerbera has said about the debilitating back pain and the fog it creates and it sounds just like me! I had the caudal injection into my epidural region of the lumbar spine in March, to stop sciatic nerve pain, which luckily for me worked, altough for only or two weeks and was very painful for days afterwards but at least it was not excruciating to go in, just a bit humilating with butt in the air (not even a friday ;-). I was told by neurosurgery team this injection is too random and often goes wrong and is rarely accurate enough to do good. Too late after it was done, although the osteo/gp who administered it advised it was 50/50 success. Funnily the numbness and pain I now have down my left leg is different to the pain I had in my right. The pain shifted once I started physio in August (yes it took that long to get a referral to physio) and started the intense exercises recommended by the spinal pathyway physiotherapist. I went from stooping badly and pain in the right leg, to standing straight with intense pain in my buttocks, thigh, hip, leg, foot. The prolapse is central so I suspect it has shifted in it’s prominence/increased it’s prolapse, as does the spinal pathway team. Or maybe another disc has prolapsed, that is quite common once one goes I have heard.

I so hope I don’t suffer as runawaycerbera  has done, with the bladder problems and in agony for so long, but I have had issues with ‘other areas’ that has been ignored and I am not hopeful I will be spared any of the anguish she has experienced. I was told by many people in the last few months, that I should have gone to A&E at christmas and again in June, instead of accepting that any movement would make me cry and that was ok. The emergency GPs felt it was not that bad, but they didn’t physically see me. If/when it happens again (it is very likely I have been told by the spinal pathway team) R and I have agreed, no calling out of hours doctors for more diazepam and extra tramadol or codeine, I will go straight to A&E.

I just feel that as I am walking and not in the serious acute phase, the medical teams seem happy that there is no longstanding damage. I worry that they will wait untll it is too late before it is sorted. It is not healing itself. It is not getting better. I am just managing the pain better by avoiding living my life how I want, and by taking a lot of drugs. I agree with runawaycerbera that I am not sure how much of my tiredness is drug related and how much is that I am so ground down, yes a lot of it is the drugs, but much of it is not. Like she said, I hurt so often, I don’t think I realise how much anymore.

I am very scared that I am never going to be me again, that I am never ever going to see an end, and that even the brief periods of relative pain-free existance is just a short term until it goes again and this is how I am going to live my life, in fear of the most horrendous agony I have ever experiened returning. It is worse than my experiences of childbirth and I say that having given birth to my son with only entinox as relief and having had a ventouse delivery with my daughter. I simply cannot bear the prospect that my once active life has disappeared forever, that my children see this shell of who I really am, that this is their mother. This is not who I want them to see as their mother, it is not meant to be this way for them.

But runawaycerbera you have given me some encouragement that it won’t be forever, that one day I may find someone will listen and remove the fucking thing. I will, without a doubt being making a trip to A&E at some point in the future. I hope like you, it is not too late when that happens, and the nerves has not been permanently damaged.

ok, that was a lot of me there. an outpouring shall we say! phew. thanks !

A Day of Suffering

Now my back is not That Bad this week, not in the grand scheme of things, and I have to remind myself of this when the pain gets to me and I crawl into the dark tunnel of No Hope. Relatively speaking, a Bad Day is when I cannot get up, cannot get to the loo, can’t easily sit up to sip coffee. Today is not one of those days. Today I can move around, I can get myself dressed and make a coffee and even put some washing away. So, if I remind myself that it has been much worse than this, why does it still seem so bad?

My back aches and hurts and my leg and foot throb with pain and numbness (who’d have thought our bodies could feel sensation and absence of sensation at the same time?) when I stand up. So i sit down. My back and leg shoots with pain and my feet fuzz and the pain makes me feel queasy when I sit down. So I lie down and it all eases just a little bit. The kids come home from school so I stand up. Yes I can do the things I need to do, but there is always payback somewhere along the line. I guess it is time to take more tramadol and paracetamol as I have got to cook (beans on toast), entertain the lovely ones (gruffalo on DVD), put them to bed (no bath, just stories). I try not to take additional tramadol on top of the modified release ones but 200mg just does not cut it some days not even with paracetamol and diclofenac. And today is one of those days.