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How things are going - A disability update 🌼

Updated: Jul 24, 2020

Evening everyone! 🌼

I can't believe yet another week has flown by and again its blog time in quarantine! Those of you who are regular on this blog will know that when the lock down was first announced I struggled to keep up with my content and staying positive, so I ended up taking some time away, and as an effort to get back into the swing of things, this weeks post is a bit of an update on how things have been in lock down and what my plans are moving forward.

There will be a few points I will be covering and each will be given a heading so you can choose which pieces you may want to read. So sit back grab a coffee, or a gin since the weather has been so pleasant and lets have a good old read!🌼


Disclaimer: This post will include topics on disabilities, including amputation and operations. It will also include a mental health update and some talks of body image and food relationships. I do not have mental health issues or any struggles with food or body image so these are my own thoughts and feelings about the issues. Please if you may feel triggered by these sections please skip to the sections that you would like to read. Thank you.


Disability Update 🌼 -

When we first came into lock down I had recently had my cast removed from my left foot, which honestly in my opinion actually worsened my condition. I had a steroid injection around my tendons to alleviate pain and a cast in efforts to keep my tendon still and relaxed to take some of the strain away as it was the most painful part of my foot. However since the tendon hadn't been moved for 6 weeks, when the cast was removed it was incredibly tight and my foot had never felt so sore. Now I have had my cast off for a while it is feeling better, but no where near as good as it did before, even though it was pretty bad. Now I get twinges and pains that I never had and I've been left with a scar like bruise over the injection site. It looks somewhat like a stretch mark but is deep blue and very sore.


I have been routinely soaking it in warm water and rubbing baby oil over my foot and tendon area and it has been helping take a little pain out and just helps to relax the muscles after they tense. I am also taking cod liver oil capsules which in my opinion have helped to give the joint that oiled feeling I felt when I first had a steroid injection.


After having the plaster removed my consultant checked my foot over and we came up with a plan of action as to where we go next in terms of making my foot more manageable and making it easier to fit things such as shoes.


This plan of action is one I was hesitant on as it was the first time seeing the registrar and not the consultant I usually see. I actually got on very well with him, but when he suggested the course of action he didn't even know what my condition was or how I was affected by it. Which after giving it a lot of thought made me feel quite uneasy that he could diagnose an amputation of all toes without even knowing I was already a through knee amputee on the right side. This honestly made me feel so uneasy because it felt like he was diagnosing a solution without really knowing or understanding any of the problem.


The plan of action we put together:

  1. MRI Scan to see where tendons and such sat within my foot

  2. Have a meeting with the geneticists to determine what my condition may really be

  3. Consider having an amputation of the foot to remove all of my toes

  4. Go back and meet after the MRI and discuss the amputation.


One thing this lock down has made me realise is that not all suggestions made are in fact air tight or the best on a case by case basis. I can not fault the care my current consultant and registrar have given me and I do not doubt that they are suggesting what they think is right, but I do not think it is right for me. Being in lock down has given me time to think and helped me to decide that I will not be going ahead with an amputation of any proportion on my left foot.


My toes may be awkward, they may be painful and they may make finding shoes an absolute pain in the arse, but let's be realistic, am I ever going to wear heels? No because my prosthetic foot can't achieve that angle. Is my foot ever going to be normal? Hell no and I don't expect it to be. But if my only choice is to keep my 5 remaining toes, or remove them? You'll bet I will keep them.


When I was younger I had this fascination with being normal or as close to it as possible, tearing the muscles in my foot struggling to get my shoes on to prove that I could do it. It really wasn't worth it. What is normal and why does it matter? My normal is getting up and kissing Dart (The pupper) and wiping his face every morning like other dog mums do. My normal is loving my boyfriend and being happy to have a roof over my head like a lot of others. I used to get so caught up in being normal I focused on every part of me the doctors call "abnormal" or "different" but so what? Yes my disabilities make it harder to do a lot of things, but that doesn't mean that literally cutting them out is my only option, like what has been presented to me for years.


Doctors over and over again recommend me having it amputated saying it will be easier, which I get to a certain extent, but easier for who? For me? I doubt it, it is hard enough for me to walk, if I were to be a double amputee I may never walk again. There are no guarantees that you will weight bare on your stump, or guarantees that you will fully heal. This recommendation comes from a point of ease and cost in my opinion, which I understand, but is the cost to the individual being considered? or the cost of what another prosthetic will cost? The times re-shaping and casting? The cost and extra resources they are then moving to another department because it's easier for a doctor to do an amputation over a reconstruction? I am choosing to not be amputated again and hold out for the doctor to come along and say "Hey, were gonna try, give it a shot at reconstructing"


I know reconstruction comes with risks, lengthy operations that may be needed more than once, and my foot leaves very little to work with, from twisted and disjointed knuckles in toes to tight skin where it has been previously pulled and stitched. I want a doctor to be proud of helping me fix my talipease so I don't wake up tomorrow morning worried that I won't be able to walk when I'm 25 or 30 or 50, because they can't give me any certain guarantees and not knowing is sometimes hard enough.


I'm not looking for a miracle, just some understanding from those willing to perform the operations. Anyway that took quite a detour on my part! As you can see, lock down has given me a lot of time to think and overthink about possibilities with my disabilities.


Another thing that a lot of people don't consider is the prosthetic. My prosthetic covers my stump on the right side and is padded and covered with a silicone skin to give it a more normal look. The skin's aren't the best in that I wear through them very easy from the pressure of the heel in the foot and some of them are worse than others, this one started to degrade maybe, after 4 weeks? Which makes it one of the worst I've had.


I am also having a lot of issues with the fit, I lost a fair amount of weight a few years and low and behold, I put it all back on, which didn't actually affect the shape of my stump, it simply meant that a roll of skin and fatty tissue grew within my upper thigh. This is also a result of the socket ill fitting for a long time prior to this. Anyway, a new method of casting has been tried for a while where they 3D image your stump to get a better view of your leg.


I had 3 different sockets with this method and they have never fitted right, it either threw the knee out of alignment or the foot, or it was simply just uncomfortable. Last time I went I gave in and said it was comfortable, simply because for 1 it was the most comfortable it had been in a long time and 2, because spending hours and hours there to still go home with an ill fitting leg sucks. But anyway I had booked in to have my leg re plastered using the old method and then - Boom - Covid strikes.


The facility I go to, in my opinion is not the cleanest, the banisters are always dirty with hand prints and whenever I used to go when I was little I would wear white socks, that would end up brown on the soles after walking trying the leg on. So it usually feels quite unhygienic so to go with Covid around seemed like a huge mistake!


I am currently waiting for Covid restrictions to go down so I can book in for my leg to be corrected and I am cancelling my MRI appointments until I feel personally comfortable to go because whilst I can cope with what I'm dealing with I don't see the point in taking an appointment from someone else who may need it more than me.


I think moving forward, I will see what other options I am offered in terms of my left foot as having the amputation will throw me into a really dark place and when I go to have my prosthetic cast again, this time I will make sure I do not say it is comfortable when it isn't and I will stick to walking up and down on it until it feels right, because if it doesn't fit right this Summer will be a nightmare!


Anyway thank you so much for reading as always!

I hope you all have a lovely day,

Feel free to leave a comment, like or reach me on social media!

🍁 Stay smiling







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