Author Archives: hippygirl2013

I’m on my way ….

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At the end of April, exactly a year since my hip was removed completely, we moved our bedroom back upstairs. The week before, buoyed by being able to get over the front doorstep on my own, I decided to try the stairs. Now, with help from my husband, a crutch and the bannister, I get up the stairs and down again a couple of times a day. I can get into my own shower – bliss! – albeit with a shower stool and a bit of help.

The study, where we slept for the past year, on the other hand, is a tip – full of boxes of a year of – well we’ll pack it away and sort it sometime – stuff.

Now I’m back at the gym too. We went a couple of weeks ago just to see if it was possible. I take myself into the changing rooms and to the pool side for a swim in my wheelchair (Short story – I fell a couple of weeks ago while using crutches at home on wet ground. Typically there was no one around and I didn’t have my phone). I can get down the ladder into the pool and swim. Front crawl and back crawl only now. It was odd at first having one float leg that did nothing, but I’ve got the hang of tensing muscles to hold it in place now. Breast stroke isn’t possible with only one leg – I get nowhere!

In the gym itself we had an MOT. Outcome – couldn’t get much more unfit. We also had a PT session to show us the machines and build a programme. Treadmills, cross-trainers, bikes (even recumbent) and rowing machines are out, so my warm up is bouncing on a swiss ball with a pair of 1Kg weights in my hands. It’s hard work! This is followed by shoulder press and arm exercise machines and an abs trainer. 3 x 15 repeats. I did think I should be doing some leg exercise, but by the time I’ve been up and down my own stairs twice, then up and down the stairs at the gym, I reckon I’ve done more that enough of that!

I come home tired but happy. A man at the gym today said to me that it was good to see someone in my position doing something to keep fit. It’s more like getting fit again – and I miss not being able to do the bending and stretching of yoga and Pilates, but I reckon getting whatever parts of me I can fit again is a bonus. 1498494821_fitnes

 

Choosing a different Street

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Street

It has been some time since I last wrote, and much has happened in that time. I felt quite low after the dislocations in October 2015 and was waiting for some surgery to revise the failed hip and make life better again. Sadly this was not to be.

At the end of February 2016, almost a year to the day, and once my blood pressure reduced to an acceptable level, I had revision surgery on my left hip. Unfortunately the wound did not heal and 10 days later I was taken to hospital with a serious joint infection. I was in hospital almost a month with e coli mutations and on IV antibiotics through a PICC line. Low Hb meant doing further surgery was difficult.

It was April, and after a month of IV antibiotics at home and daily dressing changes for a copiously weeping wound with 4 sinuses, I went back into hospital for a Girdlestone procedure where the hip joint was removed completely. My surgeon put in a spacer to still give me a joint, but unfortunately this dislocated before I even got out of bed post x ray 48 hours later. Also, there were Gentomycin beads to try to target the infection. We looked forward to three months later when, hopefully, all would be well and a new joint put in.

In this time I kept quite optimistic and we even went as far as to book a holiday cottage which was wheelchair friendly. My bedroom had been moved downstairs to my office (The Growlery) and I had the company of my husband and mother-in-law for much of the late spring and early summer.

This also did not turn out as planned. Another sinus resurfaced and at the end of August I returned to hospital with a whole new set of infections in the joint – Klebsiela and Strep B. and another lengthy stay following surgery to remove the dislocated spacer and remaining beads – those that had not exploded all over our hall floor the night before, resulting in yet another trip in an ambulance. This time we had to cancel our holiday and I fell back into the black hole.

We hoped for three months of infection free and antibiotic free from the end of November, when the IV antibiotics finally stopped again and a promised date for surgery to put another new hip in and get mobile again. This is also not to be. I have little bone, tissue and no adductor muscle left after the many surgeries to clean out this joint. My surgeon is cautious at this stage about the increased risks of infection with no muscle protection, the difficulties of surgery and the possibilities of things going wrong at my (tender!!) age. He wants to do a biopsy to find out why fluid is yet again building up in that space, but won’t attempt a new joint again for at least another three months. This is the fourth lot of three months we are waiting.

Perhaps three months seems a sensible time for him to think we can wait. However, this time we are holding out little hope for anything being done anytime soon. Hopes being dashed so many times have left us all drained. So, with that in mind there are two choices. Go back down the same road and risk falling into the same black hole again, or choose a different road.

I think a new street, with different views is in order. Maybe it is a road I continue to take in a wheelchair. If so, then we need to find a house I can access on my own and not be confined to bedroom, living room and kitchen. I can’t even get in a shower without my husband – and that is in the downstairs guest room – and haven’t seen the upstairs of my own house since April last year. I need to live somewhere where I can get out on my own, with no steps and no need to be lifted in and out, so completely reliant again on my husband. He is at work 27 miles away full time, so a lot of time is spent alone. I have businesses I can partly run online, so will concentrate on those parts. I will try to write every day and maybe one day have the courage to write the books that I have thought of for so long. I will look for holiday cottages that have wheelchair access so we can go away together this year. It may not be Italy as we hoped and it may be booked the weekend we go – just in case! – but it is part of the plan.

So this new street has estate agent windows to look into, travel agents, books to read and research, people to talk to online and anything else that will help me lift my mood and look forward to my life as it is now.

The black hole

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I came across this poem the other day.

Autobiography in Five Short Chapters

By Portia Nelson

I

I walk down the street.
There is a deep hole in the sidewalk
I fall in.
I am lost … I am helpless.
It isn’t my fault.
It takes me forever to find a way out.

II

I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
I fall in again.
I can’t believe I am in the same place
but, it isn’t my fault.
It still takes a long time to get out.

III

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in … it’s a habit.
my eyes are open
I know where I am.
It is my fault.
I get out immediately.

IV

I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

V

I walk down another street.

Copyright (c) 1993, by Portia Nelson from the book There’s A Hole in My Sidewalk. Reproduced with kind permission from Beyond Words Publishing, Hillsboro, Oregon.

I’ve been walking down other streets for a while now. Cheerfulness Street; Hope Street; Gratitude Street; It Is What It Is Street – always finding myself at this crossroads and choosing a different way. It’s always been there lurking though. A few days ago I suddenly found myself back here though. I would have chosen to walk around the hole perhaps, but last night I fell in. 

I’m not inexperienced – I have steps in my hole – I can climb out usually, but it feels too enticing to just stay here in the dark, and the steps to get out are slippery.

It didn’t take much to tip the balance either. A couple of weeks of not getting out at all (on top of four months of being stuck in the same house, same room, same chair day in day out), my husband away at the weekend so extra time on my own, a reminder that my weekend might have been broken up by visitors – except I don’t know anyone here and so don’t see anyone, and my husband announcing he both was going to be spending time indefinitely further away from the work site we expected and that he had to be there for an earlier meeting today. Just 1/2 hour extra time alone – but that’s all it took. The little jab that lost me my balance and pulled me in. The realisation – the truth of the situation I am in – I am housebound, alone and isolated. The only people I have are my husband at work, who could do without this, my son who I am supposed to be carer for, and the cat who only  really cares for whoever can bend down and feed her. I was even shouting at her yesterday for running in and out of the house, making me get up and open and close doors. The truth is perhaps that I was envious that she could run in and out of doors and visit different places.

It’s not a good week. On Monday I was supposed, finally four months after dislocations, to have the first of my surgery and have the hip that repeatedly dislocated revised. The metal levels in my blood, the damage to both hips seen on MRI, the repeated dislocations, all added up to getting it, then the other hip, out as soon as possible. Except my blood pressure is unexpectedly dangerously high. No amount of – but it could be the metal causing this, you could do a spinal so my BP drops – was going to sway the surgeon and the anaesthetist.

So here I still am – still waiting, still on my own, still not able to complete an entire task on my own, still on hippy rules, still waiting for that next misstep that dislocates one or other hip. Still in my black hole looking for the energy and motivation again to get out.

Or even just a friendly helping hand.

Dislocation nightmare

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Our parents were here for a fortnight. We went out visiting places and all was fine. They went home on the morning of the 16th just before I saw a client – all well so far. I took my son to the gym in the afternoon and decided to do my Pilates and physio exercises on the mats instead of walking. My left hip has always felt weaker than my right and so I try to keep the exercises up to strengthen it, even though they never seemed to be progressing much. That hip has always been a bit clunky too, and a few weeks ago I bent down to feed the cat and said to my husband there was something wrong – it felt as though it was popping in and out of the joint. Anyway, it clucked quite a lot during the exercise, but felt better once I’d finished. We drove home (in the mini!!) I went up to change out of gym clothes, bent down to take off my socks – and my hip dislocated.
It was quite a farce really. My son, who has autism, went next door to get my neighbour who is a nurse and she phoned for an ambulance. My quite small bedroom, with me on my side in 18 inches between the bed and the wardrobes and 2 ambulance personel and 2 paramedics in my room trying to give me morphine and work out how to get me downstairs, with my son carrying on as normal and getting his tea and the cat popping in to see what was going on. The concern was that, instead of 5 minutes away that day, my husband was 50 miles away and uncontactable until at least 4pm. As it turned out my son wasn’t able to get him until after 6pm. The neighbours took it in turns to come and check on him until he got home.
I had surgery on Saturday morning to put it back in and then found I had ‘bed rest’ but no explanation scrawled across my notes. I had been hoping once it was back in I was going home! Especially as I was on a general surgery ward and not orthopaedics, so no one knew what to do with me. Sunday morning I was visited finally by the surgeon who gave me the ‘good news’. Firstly because it had come out once, it would be more likely to do it again and secondly when they tested it in theatre in 2 particular positions it popped back out every time. I have an unstable hip. I saw a physio, they decided I was fine to go home but would need follow up. I was told if it came out again it would need to be a complete revision (replacement) of the hip.
Monday, we’d had supper, my husband took off my boots for me, I moved myself back on the settee – and it came out again. Almost a repeat of Friday as we don’t have a great deal of space in our living room either – too much ‘stuff’!! The ambulance crew eventually got me out and back to hospital where I spent the next 3 hours or so on a trolley in the corridor and the following 10 hours on the same trolley in a cubical. They certainly have some issues! I saw a doctor who was saying that late hip dislocation was usually down to soft tissue areas and I rather took offence (must have been the morphine!!) as I took it that he thought I hadn’t been doing any exercise with it and had allowed it to become weak (as it happens it may be the complete opposite – more of that in a minute), and they were just going to put it back in again and send me home. Not being great with pain I was rather afraid of this as it felt that it was just going home to wait for it to happen again – and in many ways it is. 
Tuesday, after an hour and a half wait for morphine, I was taken to a ward and told that I was not having surgery after all that day. I promptly burst into tears – I’d certainly lost my sense of humour by then. It did mean I could be consoled with a baked potato – until Sister turned up ranting because another Sister had a go at her – I was supposed to be in theatre and couldn’t go now. A doctor had quiet clearly written in my notes ‘no surgery – can eat and drink’ (I saw the notes) but had misunderstood when I had been talking with the senior surgeon that morning and thought they weren’t doing the manipulation after all but waiting for a replacement. I finally got to theatre on Wednesday and had it put back in. The up side, if there is one, is that there was a hip specialist able to pop in and I am now under his care. Trouble is, he wanted me in hospital until MRI scans and blood tests were done and I had supervised mobilisation, and possibly a brace.
None of that was possible. On Thursday everything went wrong on the ward and they desperately needed the beds. Two hours before my 24 hour bed rest was up I was dressed and sitting in the corridor waiting for my husband to pick me up while they prepped my bed for someone else. Physio said – walk unaided, yes you can swim, do your exercises, I guess you’re fine with stairs. Consultant said – crutches, no swimming, we’ll take blood, try to keep the hip in and I’ll see you in my clinic next week. As an outpatient rather than an inpatient I’ll have to wait considerably longer for the MRI. Mmmm!
The issue it seems is indeed probably soft tissue. I had a metal on metal Birmingham Hip Resurfacing (BHR) as these were being done for younger people who were still going to be able to be fully mobile. There now seems to be some evidence that the are failing in women. The metal when used is rubbing together and producing ionisation, found in the blood and causing toxicity issues (I had other problems with nerve pain and shakiness in my arms, which may now it seems be linked) and erosion of the soft tissues around the joint. This means the hip will not stay in and I am on extra strict hippy rules – no bending, twisting, allowing less than 90 degrees between my legs and torso, allowing my left leg to drift anywhere close to the centre of my body – or it will come out. Other issues involved might be my hyper mobility in my joints and also the way it was put in in the first place. Any and all of these might contribute and my husband has written to the surgeon who did the replacements in the first place.
So my husband is doing limited hours at work. My son can’t get out except for their photography course together. I’m in a chair trying not to move and doing as much of my work as possible by e mail. The joys of the hippy journey!




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Two years down the line.

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It’s been some time since I posted and thought it about time I considered my progress here. 

I successfully got myself off the Tramadol completely. It was an awful month and I felt unwell for another month after that. Not helped of course because when you come off something it needs to be replaced by something else – and that wasn’t there. The effects of the Tramadol made me feel still as though I had a bad flu.

Help was at hand eventually. As nothing surgically could or would be done about my spine (and I don’t much want yet more surgery anyway) I was sent by my GP to Physio. After a few sessions I was referred on to Dr Graeme Brown, who wrote a book I already had on my counselling shelf http://www.amazon.co.uk/How-Liberate-Yourself-Pain-Practical/dp/1899398171/ref=sr_1_fkmr1_1?s=books&ie=UTF8&qid=1439909927&sr=8-1-fkmr1&keywords=graham+brown+pain

and then to his physio team who put me on a functional restoration course. I was sure if this meant I was going to be stuffed, upholstered and auctioned off, but I was happy to give anything a go. It was an assessment, twice a week for 3 weeks and then a final assessment to see what progress was made. Five of us started in week 1. By session 2 there were 2 of us. Not a great start! At one session there was only me. So much for the group experience. The course was a system of exercises to show whether we were responding in a boom or bust fashion and to learn how to pace ourselves to increase activity, in addition to building flexibility and strength. There were talks on realistic goal setting and it was all very much CBT based. However, for me it worked. It gave me permission to not give up and decide I couldn’t do things because if I worked at it then – just perhaps – I could.

I could walk about 500m with sticks and swim 1km. If only I could swim everywhere! I built up little by little with walks with my family, swimming weekly and doing a mixture of the physio exercises with Pilates to make a programme of my own.

Cutting a long story short then.

I do seem to have reached a plateau where I get to 2 – 2.5km and don’t seem to be able to improve. However, I just did 2.3km this afternoon without any sticks. Admittedly I was limping by the time I got home, and this is not necessarily a good thing, but I still did it. I find after about 800m I can feel my left hip swelling. My left side continues to be noticeably weaker than my right and I don’t seem to be able to progress this strength with exercise. That is also the side affected by the nerve pain from my spine and had both a hip and knee replaced.

We took our holiday on our boat. Only a week out of the two, but I walked between locks and managed lock paddles and gates too – often twice each when they were not set in our direction. The worst day was the mistake of walking 2/3 km – a big misjudgement on the map – which wouldn’t have been too bad had it not been in the middle of working through 9 locks.

I can climb the stairs without much thought – usually without holding the banister, unless I am tired. 

I have been doing some gardening, albeit much more restricted than a few years ago but considerably better than more recent years.

Pain is not bad – certainly not worse than it was on Tramadol. It was replaced with Naproxen which I take with Paracetamol. The Paracetamol seems to enhance the effect. I take 2 Amatryptaline (I know that spelling is wrong!) at night to help with the nerve pain. It does seem to be better, unless I overdo things.

There are down sides – I can feel arthritis pain in other parts of my body – further up my spine aches badly and wants to bend me forwards when I walk, my left shoulder and down my left arm, and more recently my hands and feet – especially hands, have become acutely painful and I have take care of them now. Sometimes I watch them pull into spasms I have to gradually ease out of them again.

But what would it be like if I hadn’t had the replacements? It has been hard, especially having them so close together. It made me very weak and unfit and it is a lot to pull back from. But two years down the line I can do these things. They might not be much more than before the surgery – but it’s certainly not worse, and the experience of my upper body tells me by now they would have been much much worse. Two years ago I was in a wheelchair much of the time if I got out of the house at all. Now I’m walking to the river and back with my son.

It was worth it!

The end of the Tramadol tale – I hope!

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I have had no Tramadol for 9 days. Last time I was splitting one capsule into two and taking one half in the afternoon and one half at night. It wasn’t pleasant but I knew by now what the alternative was, and I couldn’t face it again just then. I knew I had to get through a working week. On Friday 6th I took 1/2 capsule before seeing an afternoon client. However, at bedtime I decided it was all or nothing now. I had a weekend with my husband around, so if I was ill then so be it. I couldn’t reduce the individual doses any more. 

Typically I didn’t sleep well on the Friday night, but it seems that was something I know just have to get used to anyway. Saturday and Sunday I spent under blankets on the sofa, chilled and shivering but sweating – I wish I’d remembered heat packs before now because regular top ups of heat into my back made a big difference to my comfort. I ached everywhere. I can honestly say the pain of withdrawal was worse than the pain I was taking the Tramadol for in the first place. I was more used to that pain and it was more predictable and less wearing than the aches. However, I have since discovered aches and pains the Tramadol was masking, even if it was apparently doing nothing for the sharp pain in my lower back and left hip that is stopping me walking far. I had diarrhoea again, very bloated and gassy, nausea and acidic.

Gradually over the week I have felt better. I have found I am exhausted by 4:00pm, but this may have absolutely nothing to do with it. I am not sleeping well because, other than Natrasleep with valerian, I have nothing to make me sleep now and I am sore and hurting, so can’t get comfortable. I’m getting roughly a 1 hour cycle (should be 90 minutes) of dozing between waking and needing to move. I can relax – that is well practised – but unfortunately as soon as I do I start to hurt in my upper back and muscles start to become agitated. The feeling of agitation generally has been frustrating and I spent a good part of Wednesday in tears. 

Things have picked up since though and I think we’re there now. I no longer take Tramadol. I can go and see a new doctor on Tuesday and say I only take Ibuprofen and Paracetamol and this is where I am with pain and movement – not something hidden by Tramadol. I have been swimming as usual and keeping up my yoga and Pilates with my physio exercises. I am personally shocked at how weak I have become over the past 18 months. My muscles and tendons, despite regular exercise, are tight and guarding and exercise stretches that used to be easy for me are now worryingly difficult. However, you get nothing without trying and I’ll carry on. It has occurred to me though that, while surgeons say it is ok to have so many joints replaced so close together, the reality is that you feel as though you have been in a car crash. And in many ways, you might as well have been!

I am still having problems sleeping, but I am waking in the morning feeling brighter than I did regardless of that. My joints and muscles are getting stronger again – I can lift my left leg against gravity 10 x 3 times (with just some pain and effort!) – a few weeks ago I couldn’t do it at all. I am in pain, but I am looking for a different way of managing it. I will not be going back onto Tramadol.

Onwards and Upwards 🙂

Tramadol – the ongoing saga

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When I wrote a couple of days ago, I received some really helpful advice from a person who read the post. It seems from this, and other things I’ve picked up online, that coming off Tramadol is neither straightforward nor easy. 

Certainly it is unpleasant. Yesterday I chickened out. I set myself 3 days for each decrease and it was going to be by a whole capsule. I did feel much better yesterday I must say. I was quite chipper all day until about 4:30 – 7 hours after my previous dose. I’d slept quite well with only one episode of discomfort and agitation – although admittedly it was about 2 hours that I was awake trying to get back to sleep. Again, it was roughly the time my body had metabolised the drug and was asking for more. By 7:30pm I was very pleased to be able to take another and could’t face going all evening and night without.

The person who responded to my last post suggested halving and then quartering the dose. Good advice! Unfortunately not so easy with capsules. I did consider asking the GP for tablets, but decided against it – hoping I’d be off these before the script was even signed and ready. I had a reasonable night last night and this morning also felt ok and not so desperate for Tramadol. I am in quite a lot of pain, but possibly no more than usual. I came down to breakfast – usually I have to take the Tramadol 1/2 hour before getting up just to get out of bed. It was hard work but fine. I felt sufficiently ok to cut the caps in half and give a half dose a go. The rest of the powder is sitting in a spoon for later (possibly for taking with a bit of jam!!) – hopefully this evening and not this afternoon. 

I have got through the morning, and I had client work. It kept me occupied although I confess to being a bit distracted. It feels as though all my nerves are back on the outside of my body and I’m freezing cold and shivery. I also notice, as I did previously, that when I need (!!) a dose of Tramadol my temperature seems to go up and I feel flu like symptoms. However, balanced with the constant tiredness of living on Tramadol, perhaps that’s not so bad, and I know now what to expect and that it will eventually go away. 

So – 2 1/2 doses today, tomorrow and Sunday – maybe Monday too – and then we’ll try reducing again.

The best thing the person who wrote to me said though was a very helpful reminder. The difference between addiction and physical dependency is the addition of psychology. Remembering this is a physical dependency over which I have control makes a lot of difference.