Tag Archives: Osteoarthritis

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.

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 Bends

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My knee replacement was 5 weeks ago today and I haven’t been nearly as good at posting about it as I was with my hip replacements. Some of this is because I have been very busy with work, but much of it feels as though it has all been said before. Having said that, I have looked back at 5 weeks post op on both my other ops and I am much further forward in many ways.

There are some things that I keep meaning to mention – more for my own memory later. My scar is about 8 inches long vertically down my left leg over my knee. It is really quite neat considering the 34 clips that came out of it 3 weeks ago. That stung! It is incredibly sensitive and feels as though all nerve endings are there. I am living in cut down jeans as I can’t bear a skirt or trousers touching it and lying in bed at night is hard trying to keep the sheet from touching it, but also keeping warm. The physio suggested massaging with cream to habituate it, but while firm pressure is not too bad, the light touch of fabric, a stroke, even a breeze, is very painful – not just in my knee but through my leg and right back into my spine.

It is also not my only scar. I noticed post op that I had a blister or two beside it and I think I may have been burned by a laser knife – those scars are still there. In addition one of the pads on my chest where the ECG machine was attached burned and blistered. I have an oval of burn scars that are now pink on my skin and look as though I’ve been bitten! No marks at all from the other ECG pads. Very strange!

My knee does hurt – it is much worse I think than the hips, although noticing how far I have come in comparison to those ops it may be that I am both doing and expecting too much. I am taking 6 Tramadol in 24 hours to combat the pain in my knee and my spine, which is much worse again. On the other hand, I am doing everything for myself. While I have’t been walking because my knee still swells quickly and painfully, I was told last week I could go swimming and have been 4 times since. It is wonderful! The exercises are much easier, though still sore, in the water but my back barely hurts at all. I hate having to get out.

I moved from a crutch last week to just my stick a couple of days ago and also have driven the automatic car a couple of times for short distances (down to town and the doctors). It is sore, but my back is probably worse. Otherwise it is the constant sticking prickle from the scar that bothers me.

The bends though – I’m very happy. I haven’t done my exercises quite as recommended by physio., but they are happy. I exercise more in line with a yoga technique of bend then relax into it and push just a little bit more. Last week at physio I had again a 0 extension and a 95degree bend. This week I’m aiming for 110 degrees and I think with the help of the swimming I will get there and also he will be happy with the strength that is building up. It is sore but much less so that previously and the stiffness through the day gets better. It is really only morning and later at night when I am tired that are worst.

Although night time can be a bit rough. I can no longer lie on either side again for long – my spine pain rather than anything else, but neither can I stay on  y back for long. There is no consistent way to relieve the pain or sleep so it all depends very much on the day. We are getting 2 reasonable nights (though this is still waking every hour) out of 3 – but 2 nights ago we gave up and got up at 5am.

I have seen a spinal specialist now, although I’m still waiting to hear about a weight bearing x ray. I see him again end of October – assuming I’ve had that x ray! I would really like to see him before given how much worse it is becoming, but I’m not sure that is going to work out. 

We go on holiday in 10 days now – to nice flat accessible Devon!! Great choice when I – and my mother – can’t walk. I suspect I am going to have to move my mind set from the young adventurer to the old cream tea mentality from now on.

Pottering On

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Having written about unexpected loss a couple of days ago, I’d quite like my life back, and I am now a step closer to that on the mobility front anyway. The knee is extraordinarily painful. It is swollen to half the size of the other leg again from thigh to foot and bruised all over in purples and yellows – Cadbury purple and Coleman’s mustard yellow! From last year’s experience of the hips that will gradually change to Kermit green 😀 I was told a knee was more painful than hip replacements and it is true for the exercises certainly. Very much a cruel to be kind few minutes every hour where I work on pushing my new metal kneecap as far back as possible ( if I’d done this with my old arthritic knee it would have locked!) and try lifting my leg from my knee, which I have finally been able to do since yesterday, and also push and push painfully a centimetre at a time to get a 90 degree bend each time. I’m taking a massive amount of pain relief, even more than pre op, so I just want to sleep all the time |-) On the positive side though, I don’t know if it is because I have already been through this with the 2 hip replacements so recently, or whether I am just used to compensating for a rubbish knee, my ability to move around and manage things is much better than with the hips. There I had so many restrictions on movement because they could dislocate. This time the aim is to sit with my feet up with ice packs to get the swelling down so I am able to get the knee through the hourly exercise regime. It’ s a tough life lying here watching others work 😉 

Work wise I haven’t done a thing. I did feel guilty when I got home but have to try to remember I had major surgery less than a week ago. The major thing I learned last year, going back to work at 6 days post op each time, is online – just because you can, doesn’t mean you should. I’m planning to get back into things gently from tomorrow.

I’m getting into a routine with my husband home just now to help me – I certainly would be struggling to manage alone while still on 2 crutches. We get up and I do some exercises for my knee while he and my sone make breakfast. We go and rest it up with ice packs until coffee time when he leaves it to brew while he helps me in and out of the shower. My mother in law sent down the plastic covering she used for showering when she broke her leg, but actually it stops me washing the rest of my leg and it is only the dressing I need to keep dry, so cling film works just as well with a quick shower. I managed to wash my hair yesterday too.

I’m so exhausted by 6:00pm though I can hardly eat or keep my eyes open. I realised this afternoon I’m going to have to have an afternoon nap and, while I didn’t want to get up from it yesterday, I did feel a lot better and managed to stay awake long enough to watch a film with my husband before bed. I also find that the relaxation eases my back, which in turn eases my knee.

My dressing is yucky, but the hospital prefer you not to change it. It is not oozing anything like it was, but from the outside it looks a pretty disgusting colour. I also think it is contributing to me not being able to bend my knee as much as I need to.

However, the weather is lovely and I’ve been able to spend time outside this weekend lying on a lounger with my book – though mostly in the shade because it is so hot in the sun. I think the increasing tan on my legs may also be a bit of a giveaway that I haven’t been wearing my stockings when I go for my post op check! Summer

 

Unexpected Loss

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I no longer have severe arthritis in my new metal joints! Having got used to something it has gone. 30 years of increasingly having my knee as an issue, in an hour and a half – and after a few months of recovery – it is a new knee. What a very strange feeling.

I wrote recently about the feeling of loss when you find you have a chronic condition – the life that you thought you would have is suddenly taken away. The future looks bleaker and you think of all the things you wish you had done while you still had the chance.

For years I have struggled, or groaned, or cut trips short and my husband and family have said ‘is your knee a problem?’. We decided we couldn’t go to Italy because we didn’t know if I could walk to visit anywhere.

… and it’s gone. I no longer have severe arthritis in either of my hips or my left knee. Ok – I still have arthritis – in my right knee, my spine, my shoulders and elbows, my feet and hands – but the bony spurs in my knee and hips have been cleaned out, the space where once just a short time ago bone was rubbing on bone is now filled with metal and new fluid. 

Admittedly it’s a bit tricky to consider just now while I am still sore and struggling with mobility post op. I have to say though, for all those people who say that having a knee done is worse than a hip, I’m not entirely sure I agree – it is just different and there are different pros and cons to each. Initially it was much more painful than my second hip, but probably not my first – I remember crying with pain then too in exactly the same time frame. While with my hips I had lots of restrictions to prevent me dislocating, I can’t dislocate this so mobility is considerably easier. It may be because I am used to compensating for my rubbish knee but I can bend and twist and reach for things, making managing afterwards much better. 

I’m afraid the stockings are off. It is so warm and they are full length and incredibly uncomfortable. I do feel incredibly guilty. I am exercises and wiggling my ankles like mad. It’s unlikely I would get a DVT. I’m taking my anti coagulants and I only have to take them for 2 weeks as opposed to the 6 weeks expected for a hip – does the say that the knee is not so bad or difficult perhaps? I’m probably moving more than I would on a normal work day. Besides, there is no evidence that the things actually make a difference and I truly believe that insisting on them day and night over a summer for 6 weeks constitutes a form of torture. So they’re abandoned and sitting dolefully on my bedroom floor only to be put back on for physio and my post op appointment and my husband has strict instructions not to give me away. The exercises start again every time I get the slightest twinge in my left calf!

I also have a tummy upset. This is NOT fun.

I’m managing the pain with Tramadol and Diclofenac and ice packs and getting out and enjoying the sunshine. Just looking forward now to our holiday in a few weeks in, as my brother in law puts it – nice flat accessible Devon! – and great choice for someone with arthritis and a new joint 😀 climbing-128

 

 

Home again, Home again, Jiggidy Jig

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I can go home.

I got myself comfortable last night. The physio doesn’t like it much. I found I could adjust the bed to lift my legs and produce the sort of astronaut position I use regularly at home to ease my spine. The last thing the physios want really is for me to be sitting or lying with knees bent because I have to be able to straighten my knee, but they appreciate the knee is not the only issue and I have promised to concentrate especially on the knee flattening exercises. I adjusted the bed to lie flat with my knees bent, took my pain relief and didn’t call the staff again all night – taking myself to the loo once. One of the most tricky bits of getting in and out of bed is doing it with a leg that doesn’t want to bend. The best way I have found to take control of this for myself is to hook my right toes under my left ankle. Then I have complete control over how far my knee moves and the speed at which I do it.

I spent the morning knitting and reading. I still feel pretty nauseous, but I’m not risking my chances of going home. The exercises went well and I reached – just about – the elusive 90 degree bend with some effort. I’m taking the yoga principle of move a bit, relax into the stretch then go a bit further. It takes some time to get the bend, but I guess it will come with time.

I knew I was going to be able to leave about 2:00 and my husband and son were off grocery shopping this morning. I gradually moved around packing my bag and getting myself washed and dressed, ate some lunch (and wished I hadn’t), saw occupational health, had my dressing changed again – the huge amount of bleeding and weeping I have forgotten to mention over the past couple of days is gradually reducing – and went through discharge with Alison, the nurse of particular note this year.

Nurses have not changed over the years. Just in these few days I have met the one who talks about her own stuff to another nurse over you as though you are not there while they make the bed around you, those who talk about themselves anyway and pay little heed to you, those who are bright and chirpy and call you ‘love’ and ‘sweetheart’ with condescension and ooze insincerity – and are usually considerably younger and as yet learned nothing about really being with and listening to their patients. There was one I took to actively avoiding, I was so uncomfortable with him! Nurses really should be made to do counselling and listening skills courses as part of their training. And those like Alison who are older, professional, know what they are doing, listen, understand and do what they can to solve the problems – what nurses should be but are few and far between.

Anyway, 2:00pm and time to go – I couldn’t get out of there fast enough. I had been really well looked after but there is no place like home! house_small