Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘osteoarthritis’

6 Years Neurologically Challenged

Last Tuesday marked the 6 year anniversary since Dystonia made a joint shattering (literally) entrance into my life. Previously I’ve marked this day by reflecting on where my life is in comparison to where I had planned it to be; not a great way to spend it and usually resulted in a lot of tears. This year was remarkably different, for the first time in six years I didn’t spend the day in tears and focused on how truly blessed I am.

The reality of my conditions means that as I age my body gets deteriorates a lot faster than a healthy person would. I already need a double knee replacement but have agreed with the surgeons to delay this until my son is in school full time. I’m told its inevitable that I will end up reliant on power chair in the future. The time frame for this is unknown, so I’m focusing on doing what I can to strengthen my body against the battering it takes from the too frequent dislocations and spasms. I’m starting by shifting the weight, it’s slow progress but I am making progress. I’ve found some local HIIT classes for mums and babies that are happy for me to do what I can whilst my son plays beside me. A month ago I signed up to the body coaches 90 day plan, which unfortunately I’m only just starting as I dislocated both my knee and shoulder and needed to let my body recover. His workouts are harder than my body can cope with right now but I’m adapting them and feeling great.

38167277_1655675684558204_6263144636441690112_n

6 years ago if you had told me that I would be OK with living with a mile long list of debilitating conditions I would most likely have bit your ear off. Now I can see how my experiences are shaping me, I’ve learnt to grasp every opportunity with open hands and jump feet first. Whilst the idea of a further 6 years living in this pain is not one that I can even start to wrap my head around. I know that I have the strength to battle it and succeed.

Advertisements

New Beginnings

At the start of May my degree came to its close. After three years living in Oxfordshire it was time to start making new plans for the future; which is why on the 11th of May we packed up and moved to St. Helens, Merseyside. It’s a long way from my family which is hard but we are surrounded by my in-laws who I love dearly.

33097324_1562904053835368_8220910331912781824_o

Happy in our new home

Getting to know a new area and work out the most disability friendly routes to places is tiring but so far I am feeling very settled and happy in my new environment. I’m now several hours away from my neurologist which is less than ideal but he has agreed that I can remain on his treatment lists. Whilst moving to a new neuro more local would be easier I don’t feel comfortable leaving his care as he has been my rock for the last six years.

I’m having a couple issues with my jaw spasms and the osteoarthritis at the minute but overall I’m coping well. I’ve introduced a new herbal supplement to see if it helps with pain relief and will be reviewing this soon.

Body Meet Osteoarthritis

This week I found myself sitting in the preop clinic of a knee replacement clinic. On my arrival it didn’t take long to piece together where I was, and even less time to start panicking as to why I was there considering I was expecting to see the Orthotic department not the surgical team.

The Dr I’d been assigned was lovely and surprisingly familiar with the majority of my conditions. I was pleasantly taken aback to discover that they had scheduled all the xrays and scans into the appointment time slot, so I was carted off down to X Ray where my knees, hips and ankles were x-rayed from multiple angles (so far I’ve just had the results for my knees). Having these pictures taken took quite awhile as trying to get my knees and and toes all pointing in the right direction is a rather impossible task. I got the impression the radiographers were not used to my host of conditions as my uncompromising feet proved quite the problem, and by manipulating them into a forewards position my knees subluxed!

So far the x-rays have revealed that I have Osteoarthritis in my knees and that really I need new knees, however due to my EDS that surgery is extremely unlikely to provide any long term relief so my surgeon wants to delay it for as long as possible. So for now the plan is to try to shift as much weight as I can to ease the pressure on my joints and delay the surgery. Whilst the diagnosis is disappointing it explains the pain I’ve been in for the last few years. I’m just keeping my finger crossed the x-rays won’t show it in my hips and ankles too.

Before I sign off, Spoonies it’s cold outside! Please if you find you are affected by the cold spend that extra spoon wrapping up warm or having a longer bath. Practice self care. This time of year can be hard, I know I’m suffering, so be kind to yourselves.

Image result for spoonies its cold outside

Tag Cloud