It has been a long long time that I have written a personal post on this blog. I started a new blog at robyngough.com with the intention of using it for designing posts, and using this one for both designing and personal posts. The idea being, that those who didn't want to hear my drivel about my life could just subscribe to or read my other blog. However over the months I just haven't had a lot to say on a personal basis.
I think it is because I am just struggling with the day to day right now without knowing how to make things work. Some of you may remember way back when me mentioning that I was no longer working full time outside the home and would now be concentrating on designing. This was of course due to my illness making it impossible to work reliably on a day to day basis. With designing at least so I thought, I could at least work when I am well and take it easy when I am sick. That still remains to be the case and was a great idea in theory, but rather than managing this way I have found myself getting sicker over time and finding it harder and harder to do much designing at all. I do think that some of the drugs I am on may be at fault. I very much think that the side effects are as bad or worse than the actual illness itself! Methotrexate is nasty stuff, the drug they use for chemo. It is an immune suppressant, and on the lower doses it worked fairly well, but I got worse and they increased my dose and now my side effects are as bad or worse than my symptoms.
I see my rhuematologist at the end of the month and remain hopeful that he will help me find a better treatment. He did say there was something else I could try.
Previously I would normally get at least 3 or 4 days a week where I could design, and that was working fairly well, but after my symptoms got worse and my side effects increased, I am lucky to get a day a week where I can function effectively. A lot of the time I don't even get that.
I suspect a great many people think I am exaggerating about my symptoms. It is really hard to explain what they are like. Every morning I wake up as tired as I was when I went to bed, my joints and muscles are stiff and take at least an hour to loosen up. Don't ask me to do anything before I have had breakfast and my prednisone and anti-inflamatories because I am likely to jump down your throat. My body just manages to function enough to get my breakfast and drugs and then I need to rest to let my body recuperate from lying still all night. Wierd I know.. but that is my life now.
Back when I still had good days the sleepyness would lift and I could do enough physically that I could get a few things done each good day. At the moment, the sleepyness doesn't leave and my brain feels full of cobwebs and I can't think straight. My body feels like lead a lot of the time and there are many days that the smallest amount of exertion, such as putting on the washing will wear me out and exhaust me.
I attemped some sweeping a few days ago, and did a really awful job, I just wanted to sweep the worst of it so the floor looked a little bit better. Well in the space of 30 mins I needed 3 breaks to sweep up the worst of two rooms. That didn't include under things or corners you can't see, just the most visable areas where the most dust was. I was huffing and puffing like an old woman. Some people will probably think I am just lazy and unfit I guess, but I know better. Two days later my arms were still sore from sweeping! My body is so wierd!
There was a time where I would run up the stairs every day when I went to work on the 1st floor. I haven't been fit in a long while but running up the stairs was not hard for me. In the last year I was at work, running up the stairs became harder and harder and eventually I had to climb up them slowly. That is not my body being unfit, that is my body going on strike.
I am home during the day but am unable to do the housework. Dean has to do the majority of it, although I might wipe a bench here or put on a load of washing there. He is so busy he has a hard time keeping up with the housework and it frustrates me to no end that I can vacume or sweep or mop. The floor is dirty and I can't do a thing about it. I hate it!
It frustrates me even more that a non physical task of designing most of the time eludes me. I get stiff and sore very quickly sitting in my desk chair, I get headaches and my brain just won't function with any clarity. Instead of thinking straight, my thoughts are jumbled.
I feel grateful that I can still keep in touch with family and friends on facebook. I can post a sentance here or there on my laptop. It is only on my worst days that I can't manage even that. Some of my worst days involve one or two naps and watching tv like a zombie in between.
I am so grateful that because I am no longer working outside the home, I can spend more time with the kids, I just wish I could work a little more inside the home.
Thank goodness I am able to be supported by the Disability Pension because without it right now we would be in all sorts of trouble. I remain in hope that some day we will no longer have to depend on it and I can work more and replace my disability income with designing income. I long to be productive again and long to design more. I love it and feel blessed I have the opportunity to do it, I just wish I could do more of it!
I hate that this post has turned out so woe is me, but it is good to get it out. I am normally a glass half full kind of girl, but there are times that my limitations get me down a bit.
For those of you who are familiar with the spoon theory, I just don't have a lot of spoons right now and I hope in time I will have a few more to spread around. Wouldn't it be wonderful if I some time went into remission, or there was some new treatment that could help me live a normal life again. You never know I guess! I the mean time, I am so grateful I have such an understanding husband and such forgiving children who do their best to be quiet when their Mummy needs a nap.
I hope to try and blog a bit more, maybe it will help to get my feelings out a bit more.