Thursday, 8 October 2015
Thinking about it logically it's bound to happen. Nearly 20 years of living with an above knee amputation is going to start taking it's toll. Not only on my remaining leg but on my whole body. And if I'm honest it does worry me for the future, as I may (hopefully!) have the same amount of time on this planet as I've had so far and I need this body to last!!
You may think what I write next is obvious and inevitable but during all these years I've gradually got more and more used to living life as a disabled person. Although my impairment is not a progressive condition, life can be unpredictable, yet many don't seem to realise that. I still find it astounding that many people still have the simplistic view that you lose a leg and get a false one and then 'get on'.
Sadly it's not quite so easy as that. Some days you don the prosthesis and it just 'doesn't feel right' so you do it again.....and again. Sometimes into double figures. Other days it's straight on and you're away. The repeated application is not good if you're in a hurry! And often there just seems no explanation, no rhyme nor reason. Then come the times when there is an issue with the prosthesis itself, which needs fixing, not so easy to get an appointment, organise childcare and travel to the limb fitting centre. Or you can't even wear the leg because you have a blister/sore on your residual limb. Frustratingly even the tiniest lesion can be made worse by wearing the prosthesis so it often needs to be left off for at least 2 days, sometimes up to 5. This situation always reminds me of how hard it is. And it's safe to say it's a 'bad leg day'.
Suddenly you go from being able to do virtually everything, to being very reliant on others and feeling extremely restricted. BUT I have, over time, got used to this and I say and mean 'it's just the way it is'. You just gradually realise that things don't necessarily get better the more 'experienced' you get, or the more advancements there are in prosthetics. It's just life as an amputee. It still does feel frustrating and annoying each time it happens but I think that it's my reality that, from time to time, things become extremely difficult but then do get better again, you learn to live with it.
This time though it's not the amputated side causing the issues but the sound side. Not so sound......
I have lived with a torn cartilige in my hip socket in my remaining leg for several years now. The only way to solve it is to have a hip arthroscopy and repair or resect the area. This is easier said than done and there is no guarantee it would work and there's even a small possibility it could be worse. Then comes the difficulty of actually performing the surgery as this involves traction of both legs. It wasn't until I had been up and down the country and ended up back in Harrogate that I found a orthopaedic surgeon, Jon Conroy (www.jonconroy.com), who was positive, also willing to explore the best possibilities for not only performing the surgery but 'managing' symptoms and not rushing to put me under the knife. A HUGE relief! As the rehab following the surgery would be 6 weeks partial weight bearing on the other leg, in my case, the prosthesis, which is of course easier said than done.
We decided to try a steroid injection, which obviously wouldn't cure the problem but may relieve the pain....worth a try. The first injection last December was a resounding success, eliminating the pain altogether from the time of the injection for a period of nearly 3 months. Of course all good things must come to an end, as they say. Unfortunately the next injection in April wasn't effective and doctors felt it was worth one more try. Thankfully the 3rd, in August, resulted in approximately 75% improvement in pain and discomfort.
That all sounds relatively simple but it is uncomfortable having the injection, particularly due to the inflammation in the joint. It is done under x-ray, to ensure the needle is in the correct place. Not pleasant. I had a very bad experience having an injection shortly after giving birth to Joe, which was extremely painful and quite honestly put me off going back for nearly 3 years! I was literally ecstatic to find the Consultant Radiologist, Dr Dominic Baron, who did the recent injections was excellent in every respect, from doing the injection itself to his bedside manner. And was in essence just a very nice guy! This makes a massive difference to me, as I've had so many bad experiences over the years. Thankfully my consultant recognised this and I was able to have the same doctor injecting each time.
With the issues connected to the hip pain being managed , frustratingly the pain I was experiencing in the rest of my leg has, over the past 12 months, become almost unbearable. I do not want to be constantly taking painkillers, but I was and also relying very heavily on the physiotherapy to get me through each week. My knee and ankle were frequently painful, often swollen and hot to the touch. My lower leg and shin have become very sore and sensitive, especially the shin bone. It came to a head when I broke down in tears at physio about a month ago (quickly rescued by the lovely Sharon with a cuppa!) They insisted I visit the orthopaedic consultant again and quickly. I expected to hear that the pain I was experiencing was referred pain from my hip. I was shocked when he told me he thought I had multiple issues, swelling and fluid on my ankle, knee pain and possibly shin splints or even a stress fracture of the tibia :-/ Next on the cards was a VERY long MRI scan.
While all these investigations were being carried out I have received amazing support from the team of physiotherapists at Physiocure in Cookridge (www.physiocure.org.uk) Anna Nelson, one of the partners became a very good friend a LONG time ago! They have been ultrasounding and massaging my leg as well as sticking needles in here, there and everywhere to try and manage the issues! I hope that, with their guidance, together with Pilates from the lovely Julie at Physiocure, hip hydrotherapy with Eliza and rest (those of you who know me well know I don't do rest too well!) the pain will improve.
So back to the original title....wear and tear. I know that many of the issues I am facing are due to overuse. Who knows maybe excessive use by me as I am not one to sit around. I am always busy...maybe too bus..... but hey we only get one life! Although I realise the grim reality is I only have one leg! And it's got to last! It doesn't help that I frequently fall too, for a variety of reasons. This week by stepping on the lace of my other shoe! I would say on average once a week. Jon Conroy referred me to another specialist, Mark Farndon (www.yorkshireorthopaedics.co.uk/our.surgeons.php?s=3 ) who specialises in foot, ankle and knee problems.
What's impressed me is that all the specialists I have seen recently have been sensitive to what I have been through in the past, particularly the unnecessary treatment I have undergone as a result of the misdiagnosis. They realise that the last thing I want is more surgery, unless it is absolutely unavoidable. They aren't so quick to slice and dice, unlike I have experienced before. They see the bigger picture....that I have children, jobs and can't non or partial weight bear on the 'other' side after surgery. They want whatever the course of action they decide upon to be the right one, believe me it's not always the case! I can't tell you how much I appreciate this.
When I was sat waiting to get the MRI results this week I was finding it hard to get 'worst case scenario' out of my head and wondering how on earth I would manage with a cast....even a removable one! I was so relieved to hear the good news that there was no stress fracture, minimal changes to the knee and no arthritis in knee or ankle (I also know there is none in my hip either :) Woo hoo!
The specialists agree that most of my pain stems from my ankle. Lax lateral ligaments, which is causing swelling, fluid collection and pain (a lot of...!) In reality the only way to solve it is surgery to tighten them. Once again this causes issues. So in order to try and 'test' whether this will be the right route to go down (it is a very successful operation which is also a positive) the next step is having the physios strap my ankle (as if it was sprained) in order to try and reduce the symptoms. This will hopefully recreate the stabilisation (similar to the surgery but with restricted movement) for about 6 weeks, then we can decide on whether to go ahead. He was in touch with my physio the same day as the consultation to explain what was required.
You will see the lovely Eliza showing Sean how to do it!
I also, inevitably, have had issues from using crutches for nearly 20 years! Physio helps but......I ended up with tennis elbow. So I was referred to another fab specialist, Charlie Talbot, who did a controversial procedure on me called PRP - Placelet-Rich Plasma therapy (you may have heard more about it relating to a controversial new facial called the vampire facial) it's been around since the 70s and Thankfully for me, despite the pain, swelling and bruising of the first few days, it's been successful!
I feel sooooooooo thankful to now have an excellent 'team' of people now working together to keep me in one piece and as pain free as possible. It also helps that they are some of the nicest, kindest people you could ever meet! Even, would you believe? Restoring my faith in the medical profession! I have the lovely Julie and Rob keeping me training in an appropriate way, so as not to exacerbate the situation. I'm doing Pilates and PT with lots of seated and bench exercises as well as swimming for CV work (no tumble turning allowed though ;-)
I am sharing their details in this post as it gives me an opportunity to thank and recommend them as I quite honestly would be a rocking, shaking wreck in the corner if it wasn't for them working together to keep me physically and mentally sane!
Believe me, I find it hard sometimes. Especially when I find it difficult to put one foot in front of the other without experiencing pain. It's hard not to feel angry that NONE of this was necessary. Absolutely all of this wouldn't have happened if one person, a Histopathologist, hadn't made a mistake. If she hadn't wrongly interpreted the slides because she wouldn't admit she couldn't see the slides properly because the MS was affecting her eyesight. But do you know what, I can't change the past. I can't change what happened so I have to just keep on keeping on, because I am still here and enjoying the good times. Live life to the full!!!
Monday, 18 May 2015
Commenting on a post earlier, on a Facebook page I follow, has prompted me to write a (long overdue!) blog post. It isn't specifically to do with my leg or 'what happened to me' but I guess it is certainly related to the struggles many of us face day in day out, even though the details may be slightly different.
It is a support group for parents of children with a milk allergy. Someone was commenting that she felt disheartened that she didn't read many 'positive' experiences on the page and what ensued was a 'heated' discussion about people needing support and that they weren't being 'woe is me'. It prompted me to think about how far we've come despite the battles we still have to fight. I still can't believe some of the things we've been through since we began this journey over 12 years ago when Hope began to become ill. Tears, despair, paying for private Doctors, insomnia due to worry or later on due to a 3rd baby with severe reflux disease, who cried constantly on every car journey for months on end.
I write this on the eve of yet another hospital appointment (I don't exaggerate when I say the nursing staff in the Children's Outpatients Department recognise us, from as far back as the days it was at St James!). This time it is for Jack. He has been struggling on and off since Christmas with stomach pains. This peaked when he ended up in hospital at the beginning of March, when they ruled out appendicitis. He was then tested for coeliac disease (the Autoimmune Disease that me, Hope and Joe have) but this came back negative. Puzzling, as it would be the most reasonable explanation given the circumstances and symptoms.
I then fought for an urgent referral to the gastro paediatricians at Leeds General Infirmary. The GP referred him and he Immunologist dictated a referral letter whilst we sat with him. Why was I not surprised when we heard nothing?!! So, as usual, I chased it up and was told we would need to wait up to 18 weeks....urgent my eye! Then ensued the usual ringing around and questioning until they 'magicked' an appointment at the fast-track clinic. This still would be 11 weeks after the symptoms were their worst. Needless to saying made arrangements to attend this long-awaited appointment with him this coming Thursday, for them to call less than two weeks before as they were cancelling the clinic and told us to attend tomorrow...when I was supposed to be teaching....or go back on the waiting list.
I guess what I'm trying to say is that this is what we have to deal with day in day out, I doubt this will ever change. No, it's not the end of the world and yes, there are people far worse off than us but it can be stressful and draining at times. But when I wrote the post on the Facebook page (see it in the screenshot below) it made me realise that these struggles do pay off and it's easy to feel so negative and disheartened by these things. But we have come so far in dealing with their allergies and gastro issues in those 12 years. I think the memories will always be so vivid, of the long difficult days with a baby who screamed for about 18 hours a day. When I wasn't even able to have a conversation with my eldest two because every car journey, even the school run, was dominated by the screaming. And sometimes all of us ended up in tears when stuck in traffic. The nights spent pacing the floor with them in the sling (thank goodness for my fellow late night friends who I was able to talk to or message - they know who they are!), learning to eat breakfast, lunch and dinner with one of them in the sling (but remembering to put a sheet of kitchen roll on their heads so as not to get coleslaw in their curls!!) Breast feeding for over 2 years, whilst eating a dairy free diet (as well as gluten free) as that is what the Doctors recommended as best for our youngest. Amongst all this we both lost our Mums within 18 months of each other, both in extremely difficult and tragic circumstances.
My health is suffering, mostly due to overuse and stress. Jaw, elbow and hip problems, requiring surgery or unpleasant procedures at times. This certainly seems to come with the territory of being an above knee amputee. But in the last 18 months I have met 4 of the most lovely consultants who have been 'patching me up' and have begun to restore some of my faith in the medical profession. Not to mention the loyal physios who now know me well :) I have recently have had to start again with a new prosthetist, which I found very stressful. It surprised me but I guess our relationship is key to literally being able to go about daily life.
I think this IS life. Ups and downs, fights and sometimes progress and you just have to keep going, as no one else can do that for you.