Tuesday 16 February 2016

Missing The Six Month Mark

Last week I realised I missed my sixth month chronic illness landslide anniversary. I suddenly experienced a horrific pain flare that started on 10th July 2015 (I remember because my bf was visiting for his birthday weekend, excellent timing) and it wasn't just a flare - I've pretty much stayed at that level (though in a bit less pain) since then. You can read a bit more about that whole general situation in my first blog post. 

When I first realised I'd missed the six month mark I felt pretty deflated. I felt as though something *more* should have happened in these six months than what has happened, that I should be feeling more better than I am, given the amount of time that has passed. But when I thought about it properly I realised that a lot had happened and that a lot of it was positive.  I decided to make a list of both that I can look back on, and also set a couple of goals for the next six months. 

So, in the last six months I have:

Seen a Rheumatologist who confirmed my existing diagnosis and what I need to do - which was good. It took 2 months for this to happen, so I'm actually really only 4 months into my process. I'm on the right track (I hope) to getting myself back to where I was pre-July. I'm also starting the Rheumatology process again here in Manchester so we can check that nothing else IS going on, get some hypermobility-specific help and also get my Scoliosis looked at as it never has been. 

Experimented to find the right medication combination, and the right frequency/doses for these - I'm fairly happy with where I am now on this front - I'm still not great at deciding when to take my painkillers, but I recently started a new long-term medication I'm having really good results with. 

Suffered a massive setback - in December, which I realise now was due to horrendous inactivity due to me thinking I needed a rest. It's frustrating to think I set myself back even further, but I managed to recognise this and made lots of changes from January. 

Had my first physio appointment - and it went pretty okay. It took 6 months to get physio sorted due to the long waiting lists in London and then moving back just as that referral came through so needing to start the entire process again back in Manchester. I'm going to be having regular appointments now & hoping it'll help!

Found a GP I really like - my surgery isn't really one where you have a regular GP; it's mainly a walk-in so there are a lot of locum doctors, but I felt like it was important to have consistency on this front & so I make my appointments with one of the regular doctors who I fortunately really like and is really helpful.

Been referred and referred and referred - this is good and bad, I guess. Referrals mean something will hopefully happen, but they do take ages and you need different ones for different things. I had a Rheumatology appointment in London last September, and last month I was referred to Rheumatology here in Manchester, and as I said earlier I'm now having Physio after that referral came through last month. I've also just had a Podiatry referral put through so I can look at getting some new insoles. 

Started my exercise regime - I now do aqua zumba, pilates and a swimming session every week, plus Physio exercises every day. I'm managing okay with this, but only because I actually don't really do anything else. I need pretty much all the time in between for recovery, so my life balance is pretty screwy. 

Begun trying to eat healthier - this is probably the hardest for me, I have never had a good diet and eating well, or at all, to be honest, does not come easily. I've been aided hugely by my mother on this front who has been rigorously adding more veg into our evening meals and buying me nice, appealing fruit like mangoes and strawberries. 

And, majorly:

I quit my London job/life and moved back to Manchester for rehabilitation - this was possibly the hardest thing I have ever done. I had a couple of reasons for moving back, but the main and most important was my health. I know myself and I know I wasn't going to do what I needed to do in London with my busy job and my busy social life and the many distractions our capital offers. Moving back to Manchester has given me the time and the energy to do the exercise and appointments I need to be doing. 


I have started looking for a job - I'm looking for part-time work for now, so I can also focus on getting better without wearing myself out so much with work. I'm quite limited, physically, in what I am able to do and this added to the part-time thing is making it a lot harder to find jobs I could do, but I am hopeful! 


In the next few months taking me up to the year mark I would like to: 

Get a better life balance - at the moment my life is purely exercise, exercise classes and various appointments with various people, which up to now is a) what I've needed to do and b) all I can cope with. I'm really hoping that in the next few months I'm going to be able to have a job and still manage this, as having a job will also give me the money to do other things. Again, hopefully I'll have the energy to actually *do* those things whilst working and rehabilitating! 

Maintain and improve my current exercise regime - the plan is to eventually swap swimming for gym sessions, and to increase the amount of time I can do this exercise for plus increase the reps, weights, all that gym-speak. 

Bring my fruit & veg intake up and generally eat more than one meal a day - you know, eat like a regular person. 

Sleep better - this has literally never happened to me in my entire life. I've always slept badly and I've never been able to find a routine that worked. My life in London was kinda all over the show so I could never have a fixed night-time routine, and being back in Manchester at the beginning was totally lacking in routine. Now I've gotten into a bit of a daily/weekly rhythm, I'm hoping that'll mean I can work on the sleep thing. 

I guess we'll see where I am in July!

I wasn't sure what picture to use to illustrate this post and then I realised that if something represented the change in my life over the last 6 months, it was my pill bag. Or the fact that I *have* a pill bag, that I constantly have to carry around a bag of tablets and remember to keep it filled. Because before July, I usually forgot to even have Ibuprofen in the house all the time. 

1 comment:

  1. Great goals! I can help with the life balance bit :) x