Out of Focus

There have been dozens of times over the last few months when I have started to write a blog post and then deleted it. The only thing I have to write here is negativity, about how I’m struggling to cope, how I feel like I’m drowning, how helpless I feel to do anything about it. I don’t want people to see the weakness when Arthur gets the better of me, I don’t want them to see my strength when I’m coping well. I just want them to see me. Why is it that after more than 25 years after being diagnosed I can’t accept that this disease is part of who I am? I’m writing this with tears streaming down my face, with a scream of frustration being held silently in my throat, it’s often there, it rarely gets any further. So I’ll push on and write, it might be a bit of a ramble but I need to get this out because holding it all in is just too exhausting.

Today has started much the same as most days seem to at the moment. I woke up, tentatively stir and assess which bits hurt the most and inwardly groan when I realise that it all hurts – my back, my knees, my hips, my hands. I’m going through a really bad patch at the moment; it seems to have lasted for months, whether this is actually the case or whether I just feel that way because of how exhausting the pain is, I’m not entirely sure. I must have had good days, there must have been better days surely, it can’t be like this every day! I swallow hard, gulping down tears to prevent them from falling, I’ve got to get up & get the kids off to school, they need me, I can’t just fall apart.

Lately (I say lately, in reality it’s probably the last couple of years) my days seem to be governed by Arthur, I have to manage my life rather than simply live it and I’m not sure if the people around me realise this. On the one hand I hope they don’t, but on the other hand I need them to understand. I sometimes have to cancel plans because I just don’t have the energy and can’t face the challenge it will present me with. I have to assess my energy levels, my ability to cope with the pain, how much something is going to hurt and if I have the time to rest and recover afterwards. It sucks, I hate it!

There are days when the coping takes not only my physical energy but my mental strength too, just replying to a message or email without screaming “I’m struggling” is harder than you can imagine. So often I stay silent, I’ll reply later or tomorrow, and then sometimes forget. I’m sure I must appear to be quite antisocial or even rude at times, I never intend to be.

It’s not just the pain which makes even the simplest things difficult, it’s the stiffness and the awkwardness that causes in my body. My hands often won’t grip as well as they used to, I drop things a lot which is not only frustrating because it makes simple everyday tasks more difficult but it’s frustrating because if I drop things on the floor for example, it can often be awkward and painful to pick them up again. I fall while I’m out walking more than most people probably would because my knees or ankles might give way because they’re weak or painful. My apparent clumsiness has become a bit of a joke…well you’ve got to laugh at yourself sometimes otherwise you’d cry all the time!!

I think the worst thing about this disease, for me, is how it affects how other people see me, not just the obvious physical limitations but also my personality, my character. It can make me quiet & withdrawn sometimes, and a bit snappy at other times. If I’m busy focussing on overcoming the pain and awkwardness in order to get something done and someone interrupts me, I find myself being a bit short. I don’t mean to be, it’s just the frustration coming out, a bit like a wounded animal snarling I guess! And when that happens I hate myself, I hate behaving in a way which makes someone else feel like they’re to blame, they’ve done something wrong; it’s not their fault, it’s just me struggling to cope. Phil and I had an argument recently which was mostly caused by me worrying about how I was going to cope with a trip away from home. The anxiety & frustration it was causing me exploded uncontrollably, we started off discussing something quite calmly and reasonably and before I knew what was happening I felt myself getting upset and angry, not fully understanding why. It was only when I’d calmed down afterwards that I realised what it was all about! And in reality I was ok, I struggled a bit a times but generally I coped well. I was with people I loved to spend time with in a place which lifts my spirit and nourishes my soul, it was blissful ! I knew I would have to pay for it afterwards and I am, paying in full, but I’m lucky I’m able to still do most of the things I want to, some people can’t - it just feels so unfair that there’s always a price to pay.

On days like today, when I wake up sore, tearful and knackered, I feel like Arthur is slowly stealing away who I am and leaving some else in my place, someone I don’t particularly like being. Hopefully tomorrow will be a better day, I keep hoping, it’s all that keeps me going at the moment.

I wish I was back in the woods, my perspective is better there.