Coping: How I deal with a relentless degenerative condition and chronic pain.

As I write this I am highly aware that some of my coping mechanisms and indeed, my actions can seem more than ‘a little odd’ to others.  Highlighted to me recently by a friend who, when I tried to explain my obsession with my Google Calendar to (GC blog entrylink), laughed at me and told me it was obsessive compulsive (OCD link) behaviour.

DISCLAIMER - I want to make it clear that the coping mechanisms I describe in this blog entry are just my preferred ways of coping. I am not saying my way is the only way as everybody is unique.  Respect others.  Always.

Yes, I do express (a lot!) of behaviour that can be described as OCD.  And do you know what?

I like it.

My behaviour traits strengthen me and help me cope with the all the issues that I need to deal with.  My actions may seem strange to others but, to be quite frank, I don’t care! Accept me as I am…or don’t.

Anyway, I digress.  The best advice I can give to anybody dealing with a long term condition is… (wait for the magic words!) …

Do stuff!!!

I bet you didn’t expect me to say that did you?  Well in more concise terms I mean don’t just sit around thinking and huddling under your duvet wishing that your life was different and waiting for the pain to subside.  The harsh reality is that, that is not going to happen.  No amount of tears on the pillow or night time prayers will cure an incurable, genetic disability or the pains and annoyances that threaten to steal your sanity 24/7. So do something else!

The more that I dwell on my declining physical disability and the heavy, increasing baggage that I continually drag with it (my luggage allowance is apparently infinite) the worse my situation seems and the pain increases filling my brain.  So even though it is incredibly difficult, not dwelling is actually the best coping mechanism of all as when I can focus my thoughts on better things, my problems seem to occupy less mind space.

Having spent a great deal of my life trying the former action (now referred to as reality denial) I finally realised that I not only need to focus both on the things I am able to actually do but also the things that I want to do.

There is a certain amount of (ok…an extreme amount of) limitations placed on everything I want to do for example: I would love to sing, dance and act with celebrity A-listers = not ever going to happen!!! However, I am able to do other things that, I know, others think weird and not everyone ‘gets me’, but that’s ok.

So here are a few of the things that I like to do:

·         Spend as much time with family and friends as humanly possible – this can just be a simple lunch date during someone’s lunch hour or a ‘more complex’ entire day out which requires planning every last detail such as where are the accessible toilets??

·         See as many films/theatre shows/concerts as possible.  The amount of planning needed for this activity depends both on financial constraints and the venue location.

·         Reading.  A simple activity but it can be performed even if you feel so tired that day that movement is a chore.  There are so books out there reading is amazing and opens me up to things I will never achieve or experience.  I use the Goodreads website to track what I have read, write reviews and find my next book (Gr link).

·         Cross stitch. Well actually I am quite good at this (even if I do say so myself)!  I mean, inevitably my physical ability to use a needle is declining but I will most probably be stitching until the end.  Please have a look at some of my work here.

 

·        Volunteer my time to meet people, make use of the skills I do have and keep my busy and thinking of other things (plus helping others and being kind even in the littlest ways is always an amazing thing to do).  Last year I volunteered as Member Secretary for Berkshire Tortoise Club (BTC link) and now I volunteer for Dysphagia Matters (DM link).

So nothing weird so far huh?  Well I am currently waiting for the results of an MRI scan to determine whether I have cervical spine compression and need a major op to patch me up and I am also waiting to hear from the DVLA as to whether they will renew my driving licence.  To be honest on both counts it is not looking good and this causes me a lot of pain, discomfort and stress (as if I needed more!).  So I have been trying to turn these negatives into positives and focus on different things.

So far I have achieved this by booking myself into a high end salon and getting myself a new haircut.  Okay I got my head partially shaved, I like it, even if others are sceptical!!

I have also booked myself in to a tattoo parlour to get the tattoo I dislike covered and turned into a partial sleeve!!

 Well these coping techniques work for me!!

Thank you - An open letter to Trafalgar Studios London following their extraordinary act of kindness

Hi

I am writing (to all the email addresses I have for you guys!) following my visit to see the matinee of ‘The Spoils’ on Saturday 13^th August.

The play was fantastic, the cast were brilliant, your theatre is lovely and your staff were incredible.  I had a wonderful day, thank you.

I wanted to take the time to say a proper thank you to everyone involved in making that day happen for me, so here goes..!

I have a disability called Friedreich’s Ataxia.  It is a genetic, degenerative condition affecting my nervous system so not only does it suck most of the time, it restricts everything I do and as an added bonus it means that my life clock is counting down at a much faster rate than the average person!  Because of this, some of the things I value very much are, the times that I can spend with friends (like Lucy, my companion that day), having days out, seeing shows and meeting lovely people (particularly if some of them are uber-talented actors!).

The time that I spent at your theatre ticked all of those boxes for me. I am completely grateful to everyone involved in organising access for me to have this day that meant so much to me.

I particularly want to thank your usher and the two strong men who lifted me down  the many stairs in my wheelchair.  They may not realise everything they did for me, but not only did their actions enable me to see one of the funniest and emotional shows I have ever seen, they spoke to me directly and ‘normally’ (which can be rare when you have a clearly visible disability, patronisation can be the norm!) and they treated me with dignity and respect.

If at all possible, please ensure that those three people in particular read this email so that they can understand what a special thing they did.

My sincere and utter gratitude goes out to you and anybody who helped organise my visit.

Thank you

Good luck solving your lift problems, I do understand how difficult these issues can be. I hope I can visit Trafalgar Studios again in the future.

Kindest regards