Wednesday, 18 May 2011

New Path Awaits

So much to digest since my last update.

Let's begin with the previous post. In it, I very bluntly talked about the future and the fact that suicide was always one of the options on the table. Mostly, this was understood but I feel the need to clarify that I was NOT suicidal. I don't intend to take my own life tomorrow, next week or next month. It's simply the case that it must be kept in mind along with the possibility that I might be permanently unable to take part in life to any great degree. I know there are some people who love me who worry when they see me mention such subjects but I have always taken the view that this blog should be full of raw honesty and I have to maintain that decision. I will, from time to time, talk about subjects that are taboo within society or that unsettle others. That's just the way it is.

My last update also elicited a very interesting conversation with a friend. Let's call her April (not her real name). April was one of those I probably classed in the broad category of 'healthy friends' and my last post expressed how I felt like I didn't exist anymore. April got in touch and was quite angry about the assumptions I was making on the subject. What initially began as two very opposing views gradually turned into a very useful discussion that made me think a lot about my present reality and my future. It turns out that April has been suffering from Rheumatoid Arthritis since October last year, a condition just as incurable as M.E. and every bit as disabling (and probably much more painful). April has also had to adapt to a life where a lot of her independence is lost and she is battling very unpleasant symptoms with an illness that is regarded as chronic.

April takes a very different approach to the one I have taken. She doesn't make her condition public on places like Facebook for example. I, by contrast, have surrounded myself with Facebook friends who are also chronically ill as I need to feel understood, believed and supported. After reflecting for a while on our different approaches, I can see positive and negatives in both. The subject is way too long to get into right now but I will be writing about it in due course as it fits in with some very important decisions I've been making lately.

Returning to the present, today I was visited by my existing Occupational Therapist and an OT and Physiotherapist from the Rehab team at the local council. My existing OT was delivering my new bath chair and the Rehab team were here to talk about how I can have a decent level of independence and keep my muscles from wasting away without risking crashes/relapses.

The bath chair was a shock. Such equipment is very clinical looking and is designed with the elderly in mind more often than not. It therefore is quite difficult to psychologically adjust myself to needing it. It looks very like a stair-lift and operates the same way so it's hard not to imagine one of those TV adverts with the old dear travelling up the stairs with her cup of tea in her lap. However, I tried it out and there is no doubting it will be useful and will allow me to use much less energy when bathing.

The rehab team were focused upon more physical aspects and we have agreed a low-level exercise plan to try for a couple of weeks and see what the after-effects are. I'll probably keep an 'activity diary' so I can measure how much I can do without 'crashing'. I'm also going to get elbow crutches to try as they may allow me to be on my feet a bit more without being in danger of falling over! They also told me about a Community Car service that sounds wonderful. I would pay for it in much the same way as a taxi, and would have to book the service a few days in advance, but the driver and vehicle would be a lot more disability friendly and could allow me to have some independence in terms of GP and hospital appointments etc.

All of this has really lifted my spirits. I am delighted with how helpful and compassionate the therapists have been and I really feel like I have people on my side. I also feel like I have aspirational goals in terms of independence and getting some sort of quality of life back. It feels good to entertain the possibility of escaping these four walls.

A few days ago, I had been at a cross-roads and had made a decision that it would be worth having temporarily increased symptoms if it meant I had some sort of life experience again. So, the support from the therapists are going to fit very nicely with that decision. It might be that my abilities remain pathetically low for a long time to come but it seems important to try and check where my boundaries are and how much I can do. Even having one day of 'activity' each week would be much better than the current situation where I am almost living in bed.

So, a new path awaits. One that will be difficult and will contain setbacks but one that has great potential and that I want to try. I still have to work out a lot of stuff in terms of what I want from my life, healthy or ill, but that can be a work in progress. For now, it just feels important to have a little hope for the future. There are also a couple of 'treatment' options I am considering but I will get into those another time as this post is already way too long!


  1. sounds like your little team was incredibly helpful - quite amazing to read about really. SO glad! and really happy they talked about preventing muscle wasting...almost brought that up with you beforehand as it seems the bedridden time may have created a lot of my current problems.

    here's to the new path, feeling supported and lifted spirits. XXOO

  2. I am so glad the therapy "team" were so understanding and have left you feeling positive. I hope you can find the right level of toe wiggling etc that helps without extra pain/crashes. It is interesting how people deal with their illness, I think RA is different to ME in terms of needing to be believed/understood but even within the ME community people do take different approaches to disclosure etc. I am interested to read your next post!

  3. Really glad the visit from OT and Physio went well. Great that they can offer various pieces of equipment that will help and the Dial-a-ride service is v good.

    Think the conversation with 'April' is very valid. In the early years of being unwell it is all too easy to get comepletely wrapped up in that experience and, in a way. I guess it is easier now with FB etc because it is possible to easily connect with other PWME (wasnt so even 10 years ago...which made one more isolated). Think Ashy is correct re as much as such a diagnosis is more readily understood and appreciated...but it is still an enormous life-change for anyone.

    Glad that these combination of events has reinforced and confirmed some of the new paths you are considering.....x

  4. YAH!! Glad to hear your sense of hope has returned and that you have a goal. Excellent work!!

  5. Oh good, using less energy to do things through each day like bathing and standing may give you enough to be able to have some experience out of the house. All good for quality of life. Echoing Lee - excellent work, as it is hard work being ill.

  6. for many of us w/ m.e. it is important to connect to our community b/c of being ignored and misunderstood by the general public. which i imagine is a totally different experience than having a recognized, validated illness such as RA. knowing me, if i had a recognized condition and lots of support ... i wouldn't be spending time connecting w/ that community but enjoying every morsel of getting away from thinking/talking about it.

    it's so wonderful hearing you set an intention to try and 'stretch' your limits a bit - then here come the lovely brigade to help you do just that! intention is a powerful thing:)

    please post pictures of you w/ your cup of tea on your new bathing apparatus (no nudity please;)
    love you BH!