Around St. Mary’s Cathedral, Sydney, July/August 2013
(Do you know, it takes me longer to find and decide upon the photograph for each post than to write the post?)
The weather has been very hot for the past couple of weeks and I am very fed up with it. Mind you, the people who are or have been closest to me would be amazed at how well I have coped with it. Believe me, hot weather and Bossymamma is not a good combination! I have always told people that my sons knew not to annoy me on a hot day because I was likely to explode at them. In fact, my Big Boy alluded to that, in a lighthearted way, when he and his family visited at the weekend. As for my Little Boy, he is probably dreading my impending visit!
I don’t know whether it is my advancing years, the Fibromyalgia, or a mixture of the two, but I seem to be coping with the heat far better than previously. I can’t begin to explain adequately how awful the heat usually makes me feel: it sucks every vestige of energy from me and makes me feel lousy. Actually, I don’t want to explain it, because of how dreadfully it affects me, so that is all I shall say about that.
To get back to the present, the heat seems to have triggered a major flare-up of the Fibro-related foot pain. It is particularly bad in my heels and often makes walking more difficult and more painful. The situation is made worse by the swelling in my feet, which I suffer in hot weather. I do take medication to reduce the swelling and I sit with my feet raised, whenever I can, but none of that helps enough. In fact, the pain has begun to manifest in my legs, in the three or four inches above my ankles. ‘Snot fair! Don’t like sore feet! Actually, the pain has been so intense, at times, that it has made me yelp. It used to be that the foot pain was at its worst soon after I retired to bed, but that is no longer the case. I think it is equally bad in or out of bed, at the moment. Sometimes it seems to be worse when I am in bed, but I don’t know if that is because there is less to distract me from it when I’m lying there. Whichever way you look at it, the foot pain is being very unpleasant at the moment.
Fatigue has also been problematic over the past couple of weeks. Obviously, it is impossible to know how much is attributable to the heat but, regardless of the cause, it has been challenging. Generally, when the fatigue is playing up, I can gauge when I have enough energy to deal with a task. However, that hasn’t been the case during this heatwave. When I have rested, I get up and start on the task I have set myself, only to find that my body can scarcely manage to move. There have been numerous times, recently, when my energy has simply evaporated. At those times, the lack of energy, the exhaustion, the fatigue, or whatever you want to call it, has been painful. I don’t mean that it causes pain but, rather, that it is the fatigue itself is painful. It has been difficult to cope with. I am used to my energy disappearing – I would say “disappearing in a puff of smoke” but there generally isn’t enough oomphf for it to manage doing that! – but the last couple of weeks have been a whole new ballgame. And, rather like the Football World Cup, I wish it wasn’t happening!
Amongst all this doom and gloom there is a metaphorical ray of sunshine: I have been granted a Blue Disabled Parking Badge! I can’t tell you how relieved I am. The whole application process caused me much anxiety. I knew that the state I am in should mean I am entitled to a Badge, but the process has been a challenge. I was so fearful of my application being rejected. My ability to go out and about has been severely limited because of the fatigue and the problems I have with walking, but I worried a lot about how well I would be able to put that across when making the application. It shouldn’t be like that and it makes me quite angry that disabled are put in that position.
When I was working, my job entailed completing all sorts of application forms for clients (I refuse to call people ‘service users’!). I had a very good success rate for Disability Living Allowance and Attendance Allowance claims as I knew how to put across the difficulties people had in a way that showed their entitlement. However, it’s a completely different matter when applying for something on one’s own behalf, as opposed to someone else’s. I suppose it’s because it is oneself who is affected by the results. When completing a form for someone else, it is very much easier to be objective than when applying for yourself. Even so, I think the ‘system’ makes things unnecessarily difficult for disabled people. During everyday life, people (whether able-bodied or disabled) look at ways that they can manage to do a particular thing but, when faced with something that requires proof of ability, or lack thereof, they have to ‘un’ think their solutions and focus on their difficulties. That is not easy. It may have taken years, with several increasingly complex ways of adapting their method to enable them to carry out that particular task. Not only is it difficult to think back and remember the difficulties you’ve had doing something, it’s also very depressing. You’re faced with the knowledge that there are lots of things you can’t do in the ‘normal’ way. Applying for any additional help is a gruelling task and one that it is not undertaken lightly.
Having clawed my way up onto my soapbox, I will now crawl down the least precarious route to tell you of one other thing that has happened since my last post.
Whilst sitting in the waiting room at the Amazing Dr. A’s surgery, prior to my appointment with him, I noticed a leaflet about something called the Staying Well Team. Upon reading said leaflet, I discovered that the team is there to help people with things to make their day-to-day lives easier or simpler. As my day-to-day life has changed so much recently, I decided I would give them a call. A lovely lady called Dawn explained that their main target age-group is the over 65s. However, in view of my difficulties, she said she would visit me to see if they could do anything to help. The visit went very well and she made several suggestions, most of which I thought were excellent. She is going to return with an Occupational Therapist with a view to my having a grab handle to help me cope with the step up to our side door, an extra bannister on the stairs and a folding seat in the shower. All of those will be wonderful as I am struggling in those three areas. She also offered me a toilet frame. hm. Not impressed. Really don’t want a toilet frame. Don’t like toilet frames. They make me think of people who are frail and about to ‘pop off’. They really are for Disabled People. And, yeuch, all those millions of corners which would fill up with nasty germy things – revolting! I am not at all houseproud, but toilet frames seem like really dirty, disgusting things. (Oh, crikey. What will I do if I reach the stage where I have to have one?) I was gratified that FPR was happy to have the equipment installed, as this house belongs to solely to him. I was also pleasantly surprised to hear that the equipment will not cost us anything.
Dawn also had questions and suggestions about social activities and said she will send me some information with my Well Being Plan. I emailed her after our meeting to ask about nail clipping services (as I don’t really want to pay £28.00 a time to a podiatrist to cut my nails!) and she has said she will include that information, too. Apparently the aim of the team is to delay the need for social care intervention. Whether that will be result case remains to be seen but, so far, what the team provides is looking good. Watch this space!