Monday, 27 September 2010
There are no strict guidelines for what you are supposed to do or achieve as a young adult. However, the majority seem to follow the pattern of university, travelling, starting a career, getting married, starting a family etc. Where does my life fit into this pattern? I obviously have uni under my belt but the rest seems worlds away. They are all things I want, but I cannot see when they will happen or if they will happen. I don’t want to spend my life trying to catch up with people and I don’t wish to do all these things just because the people around me are. I want to find my own purpose and route into the next chapter of my life. One where I am comfortable but continuously challenging my condition (so that I am not refused a seat on the plane if I so wish to travel). I am happy to be the babysitter and the bridesmaid for now (rather than the mother and the bride). That is all to come for me I hope but won’t happen for a few years yet, I am sure.
I will miss my friends dearly and would love to share the experience of seeing the world with them. But, for now, I will have to see it through their eyes and concentrate on what I want from life right now… a career mostly! And a lottery win would be nice….
Tuesday, 21 September 2010
I have found out that in the UK, surprisingly, even if you are on benefits you can work full time in a voluntary position. I’m unsure how this is allowed; surely if you have the ability work full time then you would want to get paid for it? I understand the flexibility that comes with volunteering, though, and it seems like a good option for people with arthritis. I have been doing bits and bobs of volunteer work over the months I have been sick to help others and keep busy. I strongly recommend this to anyone who is looking for a path into work as it is a good confidence booster and does wonders for your self esteem. I have felt like a failure because of unemployment in the past. I have felt defeated and insignificant to society but ensuring I do something worthwhile with my time is, slowly but surely, diminishing these feelings.
It’s so easy to sit and wallow in your pain but arthritis doesn’t define me, and it shouldn’t define anyone. Find a hobby, donate some of your free time to a worthwhile charity (even if it’s a case of working from your bed – as I have often done) and most of all do something you enjoy at least once a week. It will be a lonely and sorrowful life if you don’t chose to do something about it. I have just completed my first book, which has taken me three months to write, but I have thoroughly enjoyed investing my time in something I enjoy. It has given me something to focus on and a goal to achieve. Now’s the hard part (trying to get published), but I have a strong sense of pride that I have, at least, achieved something this year. Remember that life is what you make it, so what do you want to do today?
Thursday, 16 September 2010
So it has taken me about 19 months to get to this point. What is frustrating me is that I have tried to get hold of someone at the hospital where I will be having my treatment to find out when I will be going in. After all, I do have a life, which because of the nature of the treatment and the fact it made me unwell previously, I have to plan around my admission. It means I will probably be out of action and extremely tired for about four weeks, if it was anything like the last infusion I had. So, when the hospital and Rheumatology department fail to return my calls, inevitably I become very impatient. I am suffering, and isn’t it the main purpose of the NHS that people are not left to suffer in this country? I read an article recently that suggested the NHS treat Rheumatoid Arthritis diagnosis as seriously as cancer. This is because people with RA, on average, die 10 years younger than a healthy person. So if our lives are being cut short by a decade already, our healthcare providers should be doing all they can to ensure early treatment to effectively control this disease. I want to live a healthy, long life but imagine that this waiting around will be a common occurrence with the NHS. I wonder how quickly I would be treated if I had the money to afford private care?
I am still waiting for someone to get back to me about my treatment. Maybe in the meantime you would like to share your stories of timings between diagnosis and treatment, so I have something to read while I wait… and wait….
Friday, 10 September 2010
I waited patiently for my turn, as always, and got the sense of relief I always get when sat in front of him about to discuss various problems. I instantly feel better, usually, when I go see a doctor, having confidence that they will check everything out and not let me suffer. However, I have been frustrated on several visits and haven’t always got the outcome I wanted. I have felt like the doctor has had a lack of interest in my concerns or can’t be bothered to do necessary tests to sort things out. Most issues I am having are put down to having arthritis. I wonder where this will stop though, I understand that a swollen ankle may be due to my arthritis but if I walked in growing a third arm would he simply say ‘Its probably due to the arthritis’. Erm, I think not.
It made me recall a slightly amusing episode a good friend of mine had whilst visiting his GP after noticing some small lumps appearing randomly on his arms. Now anyone in their right mind would go and get any significant changes in their body checked out right? Just to put their mind at ease. He explained to the female GP of Indian ethnicity that the lumps were concerning him and after examining them, through the power of sight, she diagnosed them as, and I quote, ‘Life Bumps’. Yes you heard me correctly. A professional with years of medical training was now dishing out diagnoses of life bumps. When my friend questioned what, indeed, ‘life bumps’ were she replied (in an upbeat tone) ‘You know, just BUMPS OF LIFE’. Right.
So you can understand my concern when my doctor seemed to brush off the lumps that appeared on my leg. In his defence, he did request a blood test, however nothing in the results could explain the bumps resembling the peak district on my left shin. So, leaving the surgery frustrated once again, I went on to fight for an appointment with my Rheumatologist to request further explanation for my own ‘bumps of life’. My appointment is next week so I hope for some answers. For more appropriate medical terminology and diagnosis of my life bumps, watch this space.
Monday, 6 September 2010
So as part of my campaign to do as much as I can whilst I am currently on a good (almost pain free) run, I jumped at the chance to join a group of friends of mine on a five day trip to the party capital of the world, Ibiza. Some of you may think I am crazy to be taking part in such a trip but I know my limits and capabilities and was determined to not miss out on yet another fun filled week.
It’s fair to say the week wasn’t without its disease related downers. I experienced fat leg syndrome (where my whole left leg swelled to the size of Brazil), sore feet and ankles (dancing the night away can have this affect on arthritis sufferers) and I have returned home with a stinking cold and exhaustion. But, hey, I’m not dead right? I survived the trip in one piece, proving those of us with arthritis CAN have a good time and CAN get down with the best of them. Five days of little sleep and lots of dancing really has taken its toll on me, but I would do it all over again. It was so important for me not to miss out. I get sick of not being able to do things. So what if I have to sleep for a week to recover? It is all worth it when I remember being stood on the dance floor in the middle of super club Amnesia, looking around at everyone, thinking I am just like you. (Well maybe a bit more sober than you, but near enough).