Tag Archives: Osteoarthritis

The new exercise regime

Standard
The new exercise regime

I have been wondering for some time how I can do some exercise to help my other areas of arthritis – essentially everywhere – without dislocating my hip. I have tried walks, but it is not far before I am in too much pain in my spine and exhausted. The pain lasts too, which is rather off-putting to try again. I was reluctant to go to the local swimming baths. Besides them being slippery and noisy, my husband would not be able to be with me to shower and change in case of difficulty. It is also cold. By chance, we heard of a local farm that rented out their pool. The three of us have been going weekly for a few weeks now. It is quiet and is like having a private pool. The water is warm and salty rather than chlorine. Swimming and floating there is a blissful relief from most of the arthritic pain.

I have done yoga though since I was seven years old and got up on Sunday mornings before anyone else to follow the yoga routines on tv. I’m reasonably sure the lady was called Lynne and that it was about 7 – 7:30 on a Sunday morning. I tried to do these myself for the rest of the week. In addition, as I got older, I would spend my time listening to the Top 40 on Sunday evening and spend this time in gentle exercise and stretching too. I was always flexible – hyperflexible even – which is most likely the main cause of my problems now.

So in addition to swimming, yoga was the exercise I missed most. I have thought over a long period of time what I can do to still manage some of these stretches safely. For the last few days, I have built up a new routine while not as challenging does give some stretch and strengthening relief and is something that can be built on. I doubt I will ever be doubling down to the floor again, but with a yoga mat, a chair, a gym ball, 2 x 1kg weights and a couple of cushions, I have a plan.

Warm-up:

Breathe.

Gentle arm raises to the side and over-head x 3 stretching spine.

Raise arms to Mountain pose – bend gently left then right x 3.

Raise arms forwards and with full lung gently stretch back in Sun Salutation. Bend forward slightly lowering arms and holding hands behind back pull up to stretch behind – movement x 3.

Arms out to sides at shoulder height. Turn palms upwards. Bend gently to the right bringing left arm over-head towards the right palm. Hold for 8 seconds. Repeat movement to the left.

Roll shoulders back then forward 3 times each.

Neck – forwards and backwards, turn side to the other side, bend one side to other side x 3 then roll neck fully in both directions. 

All this works on my spondylosis, lordosis and scoliosis – with my trapped nerves in neck and shoulders and my recently acquired occipital neuralgia!

Main:

Holding a chair, bend gently into lunges to both sides, Downward Dog with legs wide and leaning arms at chair height – not floor! – stretch the spine in Cat, then lower to the floor gently.

On each side: Clam x 8 and Side Leg Raise x 8 in 3 blocks. With no abductor muscle on my left, this is little more than tensing the remaining muscles and with a pillow between my knees to stop me rotating forwards and dislocating my hip.

On front: Cobra – hold for 8 seconds, followed by Plank held for 8 seconds, and Swim 8 times each leg. Repeat sequence 3 times.

On back – knees bent and gently rolling sit-ups – just enough to stretch – dragging hands from waist to knee as a guide (to be honest I couldn’t get any further now anyway!) x 8, Bridge held for 8 seconds. Repeat routine 3 times. 

Pillow between knees and lift both legs together. Slowly lower (Clock) to a count of 8 and repeat 3 times.

Sit: Use a cushion to push the pelvis forward and settle into postion where the back is straight. Sit with legs wide and stretch hip tendons. Pull right leg into cross leg position. This is my stiffest hip and knee now so I relax into the pose then pull a little bit further. Release then repeat with left leg. Having had no hip joint here for two years and no abductor muscle it is easy for this leg to flop into a cross leg bend. Relax then pull right leg back to stretch and train into full cross leg position. Relax into soles of feet touching and pull back carefully to stretch tendons again.

Stretch up into sitting mountain pose. Rest arms at breast height on each other and push together – 4 up and 4 down – repeated 3 times.

Pull arms behind back, hold hands, pull up and hold for 8 seconds x 3 repeats.

Roll onto front and repeat adapted downward dog along with cat stretches leaning on a chair before lifting up back to feet. I can’t do this on my hands and knees because my knees are too sore. My left knee is already a full replacement and my right knee is about ready for one.

Gym ball and 1 kg weights. Sit on the gym ball. Raise weights in hands 8 times to either side, 8 times in front to side – like a chest pull – then above head 8 times on either side. Hold weights while doing a gentle figure of eight rotation in both directions 8 times. Repeat – yes you guessed it – 3 times!

Stand and sit on a chair for short meditation to cool down.

It took me about 45 minutes to do this morning and that feels about right. It doesn’t relieve the pain completely, but it does feel better and that at least I am doing something to help myself. 

Bear in mind I have no qualifications or experience beyond what I have learned works for me. When I get to see a physiotherapist again next week I will ask if what I am doing is ok and see what else can be done to strengthen my neck particularly to help the occipital neuralgia. However, it is very calming – and that is an excellent thing :-).

white concrete buddha statue

Photo by Pixabay on Pexels.com

Pandora’s Box

Standard

I have not written for some time. Things have been very difficult. Following my last posts about the failure to get any justice – even an apology – for the damage done to me and the lives of my family I had a double bereavement with both my brothers (twins) on the same day. I was executor for them both, so my time and thoughts were taken up elsewhere. I gave up even pretending to work and at new year gave up my shares to our training company to my partners. I moved house to the other end of the country. I expected to have major surgery on my left hip, which has dislocated now seven times since it was revised again in January 2018 and been aspirated twice. However, the surgery was cancelled just as we were about to leave for the hospital – at that time a seven hour drive away.

While not fun, my most recent dislocations and aspiration have at least put me on the agenda at a more local hospital to me, which is also a major trauma centre. There is a plan in the next few weeks to do what was planned at my last hospital. However, what was planned there was staged revision, plastic surgery and washouts. This time the plan is to do the revision in one surgical procedure. All the metal, hip, bone graft, cement etc will be removed again. The area will be washed out with antibiotics. The new completely constrained hip will go in. The plastic surgeon will take muscle and skin from my back to fill the cavity where muscle and tissue has had to be gradually removed in the past due to necrosis from the metallosis caused by the metal on metal hip. Unfortunately, it will not act like the missing abductor muscle, so will be weak still and my back, which is also an issue with osteoarthritis, will be weaker still without muscle mass on the left side. The surgery is expected to take 8 – 12 hours, so theatre is being booked for me for a complete day! I will have blood transfusions. I will be in the plastic surgical ward for at least a week on my right side so the grafts can heal and hopefully take. Then I will be transferred to orthopaedics to get me moving again. Altogether I should expect to be in hospital for 2 – 4 weeks. This will probably happen in early November. At the beginning of this story I never expected at this point I would be writing these things at all, never mind in such a way as to make it sound like a normal everyday occurance.

In the meantime I am trying to find ways to keep up my spirits, feel well while I feel unwell almost all of the time, lose weight and ease the remainder of my body with exercise. I am managing some very, very short walks with lots of support. I have found a way to adapt my yoga to try to ease my spine, neck and shoulders but not dislocate my hip! All this is before we consider what might happen to my right hip which is also metal on metal. 

This surgery coming is my absolute last hope. So many things can go wrong and make everything even harder. The surgery may damage my sciatic nerve as the contents of my left hip space are a dogs dinner after 18 surgeries. There may still be infection hiding in there ready to raise its ugly head again. The hip and new muscle may not take and I may end up with a complete Girdlestone. This will be the last time any surgery can be done and so once this next hip fails then it will be a Girdlestone eventually anyway. Still – at least that can’t dislocate!

On the other hand, it may work and I may have a few years back to be able to walk and gain some fitness and independence again. Like Pandora’s Box where the ills of the world resided and escaped, Hope was found still amidst the darkness.

 

Burnout

Standard

I am a people pleaser. I don’t like confrontation and want to help as much as possible. I would like my epitaph to be – she did her best to help and tried to always see the best in everyone. I would like to be that good, though I know I’m not always and I catch myself not being the kind and generous person I want to be and try to change.

I see the anger that others feel about the pharmaceutical companies and solicitors and legal decisions. I am upset and disappointed that things have not turned out the way I hoped, and a bit resentful that my life has changed so much from what I feel at my age it should be – and that others feel they have to look after me. I grieve for the loss of the life I feel I could have had, but I don’t have that anger. I remember feeling anger a long time ago and making myself move away from that as it felt frightening and out of control – and I need control.

But now I have burned out. It took others to recognise it but mostly myself to admit to it. I always feel I have no right and there is always a bit more I could take on, and guilty that I might be putting on to others. But I wanted – needed – to run away. I couldn’t face emails or anything from work. I couldn’t answer the telephone or open letters. I couldn’t respond to emails and eventually each day only the absolute necessities got done. 

It is still a bit like that but I think the Sertraline has reduced the anxiety a bit. I still feel it and it gets to me, but it could be much worse. I can feel a bit more rational and make some basic decisions. I still feel the opportunity to buy our own house with parents – the type of house I never thought we could own, is a bit unreal. I can see my husband and son and parents in law there, but still not me. I feel I am dying and may never get there. I’m not scared as such but feel very sad that the promise of a home of my own or the surgery that might finally help me will come along. It all feels a long way away from me and while there is more manageable anxiety the dark thoughts still plague me – more so when my husband is feeling more psychologically able and productive and things are happening around me but not to me.

I read a blog this morning https://www.thecounsellorscafe.co.uk/single-post/2018/07/03/Is-your-childhood-the-cause-of-your-Burnout which says:

“People pleasers often come for therapy with burnout symptoms. An exploration of the early childhood of these clients can often find that they; grew up adopting the ‘peacemaker’ role within a turbulent household; grew up with strict parents with rules and regulations they had to follow regardless of their true feelings or beliefs; grew up with a parent with a mental health issue which meant they had to be ‘good’ and not create any trouble or added pressure for that parent, putting their own needs aside; or grew up with a sibling with a physical or developmental difficulty such as Asperger’s whose need for parental support was greater than the sibling without difficulties, hence the ‘well’ child grew up compliant recognising their needs were less important.

All these scenarios can contribute to a person’s inability to emotionally regulate themselves and a failure to attend to or even notice their own physical symptoms of burnout. The background and old dynamic of people whose needs were put aside can often repeat itself in the workplace as they put the emotions or needs of others before their own and fast-track themselves down the burnout road.”

This pretty much sums up my childhood and still I have those feelings of being less important, more able to manage alone and not being good enough. Even over the past few weeks while my husband has struggled too, I made him tell the GP at my appointment how he was feeling, and he dropped into a hole. Since then everyone has worried about him. My mum has just stayed here and at least twice has referred to how he is struggling or may be getting a bit better and commented that he might not manage to organise something but I can do that for him. Twice I’ve pointed out that actually, I’m on double the dose of Sertraline that he is, but then back down. It is ok for him to be struggling emotionally and psychologically, but not me, because I’m expected to just get on with it and look after others – like my mum does.

I have enough to look after – her as she continually battles with my alcoholic, selfish and hopeless brothers, who I still suspect of attention seeking as they have all their lives – as my dad did. So I feel I have to be there for her, even though she is many miles away. I have my husband, who looks after me so I feel guilty and feel I have to do as much as I can for him. This is not difficult as we are a team and I want to look after him, but I fear that he may one day have had enough. I have our disabled adult son to try to manage and keep calm. I have had to remove myself from people who have made me feel worse (in the main) because I simply haven’t the energy to manage their difficulties as well as my own. Difficult when my profession is all about helping and supporting other people, so that adds to the guilt trip.

I don’t know where I am going with this. Everything still feels hard but I don’t feel I can tell anyone and bring their mood down too. I feel I am not entitled to be like this. I feel the anxiety still sometimes becoming overwhelming and feel my feet flapping urgently under the water while I battle to stay calm for everyone else on the surface. I need some time alone to revive my energy levels, but struggle to find it – or have space where it is quiet and no one is talking or doing things. It may only get worse when the family living together gets bigger. But just now, just here, I can say how I feel. Would I still feel this way if the disastrous situations with my body had not happened? Who knows. It may be this in reality that has been part of the journey to this point, hard as it has been and still is, so I am trying to look at the bigger picture. But for now I just need peace, calm and to rest.

 

Invalidated

Standard

My story started when I had metal on metal Birmingham hip resurfacing, on the advice of my orthopaedic surgeon, left and right hip in 2013. They were supposed to be the best thing since sliced bread for younger people. Sportsmen and dancers were having them done. Indeed Craig Revel Horwood had the same procedure as me in the same week and was dancing across the Strictly stage five weeks later.

My left hip failed after two years (2015) with dislocations due to metalosis. After the second dislocation, I was told this was happening, mostly to women who had smaller prosthesis fitted. The metal from the prosthesis was wearing and breaking down tissue in the joint. My blood levels of cobalt, chromium and nickel were way above the threshold limits for immediate removal, altogether known as ALVAL (aseptic, lymphocyte-dominated vasculitis-associated lesion). The metallic particles create a very dangerous hypersensitivity reaction or abnormal immune response. ALVAL can cause inflammation, fluid, and psuedotumors (tumour-like lumps) to develop around the affected hip joint. As a result, critical blood vessels and muscles can be completely destroyed, resulting in grave disability or even death.

My hip was revised but became infected – twice. I had a year (2016) of intravenous antibiotics of last resort, followed by complete removal of the hip to save me, sinuses on my leg, continual draining of turbid fluid from my leg, or – once it finally healed – swelled up instead. It has been washed out, necrotic tissue, muscle and bone removed, partially revised twice more and I was left with no hip joint at all for twenty-two months, managing to get around the house hopping with a walking frame or in a wheelchair.

It was finally revised again in January this year (2018) and dislocated in March and May (and about ready to do so again) because of the metal fragments still in my tissues. I have lost my adductor muscle and much of my gluteus, other tissue and necrotic bone and my femur is spongy. The pseudotumours are in my groin and pushing out a difficult-to-dislocate hip through the pressure of the pseudotumour fluid build up. The turbid fluid drained from my hip each time is well over a litre and contains blood clots. My surgeon has now admitted defeat and referred me to a plastic surgeon and hip trauma specialist.

My next surgery will be the fourteenth on my left hip and sufficiently radical that I have been warned that I may bleed to death (exsanguination – the femoral artery is already compromised and bleeding due to pseudotumour), may injure my sciatic and femoral nerves so that I lose the use of my leg, and will need high dependency care. The complete removal of everything will be followed by at least four further clean outs over six months and intravenous antibiotics before an attempt is made to put in another hip. This is without consideration of the already failing right hip (fluid was seen around this hip in 2015 but was not as bad as the left). My BHRs were 40cm and 42cm, which have since been recalled by the large pharmaceutical company who make them.

I am exhausted, ill and depressed – as are my husband and learning disabled dependent son. Our lives have changed irrevocably and it is an ongoing nightmare from which we can never recover. I am disabled, have lost much of my own work and income, my husband has lost even more from his need to care for both me and our son and the over one hundred hospital visits so far in the past thirty-two months. 

We joined a group action against the pharmaceutical company with a large group of solicitors. The pharmaceutical company now threaten us with costs over a legal case they say we cannot win against them following a judgement in another larger case regarding metal on metal implants. I have now received a letter from my solicitor, following advice from QC, to say they are dropping the case against the pharmaceutical company regarding the faulty metal on metal hip appliances, even though the size of mine was deemed to have an over 25% rate  of early revision required in 2010, and if I pursue it alone I will have no insurance.

I am feeling rather invalidated for all our continuing struggles. Oh – and there are dire warnings about me not telling anyone!

The nightmare of metal on metal hips continues.

Standard

Whenever there are ‘ups’ it seems there are also ‘downs’. Life is a bit of a rollercoaster. We managed fine last summer. We had a holiday on the south coast and Kent. We managed to find self-catering accommodation with wet rooms etc that I could get into. We visited places that, mostly, I could access by wheelchair. All was well enough that my surgeon booked me in to have a new hip fitted in January 2018.

During surgery, he aspirated over a litre of murky turbid fluid and for a short time I had no huge lump on my left side. He told me though that he had removed so much tissue and muscle that he had stopped just short of plastic surgery, my femur bone was ‘spongy’ and my leg now looks like a relief of the Malvern Hills.

However, it was not to stay that way. Within days the fluid was coming back and swelling my leg and side up again. I was in pain as I stood on the hip and soon it had a significant swelling and was strangely bruised. X Rays showed I had not damaged the bone graft, fortunately, that had been put in to try to hold the hip in place as there was insufficient socket left and no adductor muscle.

I did some research online as I was trying to make sense of what my surgeon was telling me. The particles of cobalt and chromium from the original hip resurfacing do the damage to the tissue but are so small it is almost impossible to remove all of them, so they keep doing damage. My surgeon has already removed a lot of necrotic tissue and bone, the whole of my adductor muscle and part of the gluteus muscle. There are still areas affected but he cannot get to those because they are too close to major blood vessels, so chances are, like any tumour, these will keep re-growing. The x-ray does not show the fluid build-up, but he suggests in a few months we do MRI again, though watch its progress in the meantime. It could dislocate my hip, and also there is a one in three chance it will also happen on the right side. He hopes (!!!) – as do we, that things go better now, but there are no guarantees.

I started to have physiotherapy to build up strength, especially around the rotator cup in my hip. On March 25th on a trip to Bath, my hip dislocated while I was sitting in my wheelchair having lunch. We had an hour and a half drive back to the hospital. I was in hospital for a few days with the dislocation until my own surgeon could do the reduction as he thought he may have to open the hip. He also wanted to prepare a different cup to make it more manageable to keep it in place. He had great difficulty getting the hip back in, as it is a cup designed to be hard to dislocate, but managed to do it closed. Afterwards, he could not dislocate it again, and he is a big, strong man! He aspirated the fluid and took out one and a half litres of turbid fluid that also had large blood clots in it. It seems now that blood vessels are also compromised by the metal particles and tumours. The tumours, he believes are in my pelvis now and, once swollen, the pressure dislocates the hip. I was allowed out of hospital once I was fitted with a brace. Unfortunately, after three days of nil by mouth waiting for surgery each day, I had a urinary tract infection to contend with too, so a trip to the out of hours GP was necessary.

Within a couple of days, there was another bruise on my left side and pain in my groin. There is a concern about an aneurysm. I had a CT scan with dye, but unfortunately, the images were not good enough to see where the bleeding was coming from. Six weeks after surgery my hip dislocated again as I was sitting in my chair and reached to my right side to pick up my coffee from the table beside me. This is now the twelfth surgical procedure on this hip in less than five years – my fifteenth general anaesthetic and surgery altogether. It was reduced by a different surgeon as an acute case. However, we cannot carry on like this. Both my husband and I are struggling with chronic anxiety and depression and finding work difficult now. We have tried to be ‘normal’ in significantly abnormal circumstances for too long and are burned out.

The way forward now in summary.

My own surgeon can do no more and is referring me on to a Plastic Surgeon in a different hospital, as he can do more radical surgery. He:

Feels there may be enough tissue to manage removal and reconstruction.

Can feel at least two tumours.

Considers a 2-stage approach is necessary over 6 weeks to 6 months but is a major undertaking (his words!)

The first stage is complete removal of the prosthesis, cement, cadaverous bone and tissue, preparation, and biopsies to try to make a sterile space.

May be able to use quads muscle as a flap.

He has warnings regarding: 

Bleeding (to the point of exsanguination – though fortunately, they have a cell harvesting system – at least, I hope that’s good!) and that with internal bleeding already it may be that they can’t do anything safely.

The radical approach required will leave a large cavity

Issues related to lots of previous surgery – may not be able to find a way to work easily and cause both more damage and bleeding

Sciatic and iatrogenic nerve damage and femoral vessels – pain and weakness and possible paralysis

Inability to find enough tissue to work with once open

Infection is now about 10% instead of 1%. Actually, they both think the infection is still there but lying dormant

Length of first surgery would be about 4 hours followed by high dependency unit

He feels the waiting list is about 6 months – so we may yet be back to my local hospital with dislocations!

The other new consultant is a trauma hip reconstruction surgeon who works with the plastic surgeon. He:

Feels there probably is still some residual infection ‘hiding’ there.

Would want to do possibly 4 intermediate washouts and tissue debridement between stage 1 (removal of all joint and affected bone and tissue) and 2 (new replacement).

IV antibiotics again!

Will probably put in complete constrained hip – very limited movement – at an eventual second stage.

He warns regarding:

Infection – 10% risk

Inability to put a hip in and may be left without – known as a Girdlestone procedure and long-term antibiotics. I did have no hip at all from April 2016 to January this year, so we are used to that, although it being forever feels like a very big thing.

Despite this, both surgeons did inspire confidence in us and were open and honest.

All this ‘lovely’ news cost us £500, a 150-mile round trip and a panic attack from my autistic son because we were there so long without supper.

We have talked to our GP about funding now for this through NHS, although we are talking about a possible move to the area I can have plastic surgery. My husband’s parents have recently sold their house and are talking about pooling financial resources and us finding somewhere together so they can be on hand to look after us!!!

So … nothing to worry about!

In the meantime, the legal case against DePuy with a group action of 312 people with damage from metal on metal hips has failed. This means that my own group action against the pharmaceutical company is compromised and we do not yet know if a legal case can be taken forward. However, while at first, I had lots of time, there is a time limit on these things and for me, the legal process must start before the third anniversary of my first problem with the hip in October 2015 or I cannot take it to court against the company. They win in all ways while we continue to suffer from what feels to be their neglect in testing.

 

 

 

 

 

I’m on my way ….

Standard

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

Standard

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.

Standard

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

Standard

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

Standard

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