Bon Voyage

The time has come to say goodbye (for now) to some very special friends of mine. As they embark on their adventure, travelling around the world, I can’t help but feel left behind. Sometimes it’s difficult to watch the ones you love move on with their lives when all you feel is stationary. It got me thinking about the next chapter in my adult life and if those exciting adventures will ever happen for me or will my condition always hold me back. I have accepted that I cannot go with my friends and I should feel lucky that I at least get to spend some time in Australia with them. But as the time nears when they have to fly off without me, I have these recurring dreams that I am standing in departures at an airport watching all the people I love board a plane without me. As I struggle to walk, because my knees are bad, I can’t catch up with them and then the plane takes off, leaving me alone in the airport.
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….

Do something

When you suddenly have so much time on your hands, it’s hard to know what to do with it. Since I have left work, fourteen months ago (God, has it been that long?) I have struggled to fill my time so that I don’t go stark crazy and lose the plot. I have never really been one to sit around and do nothing. I get itchy feet and bored quite easily. I have found I am addicted to reading. I love the escapism of a good book where I can forget all my troubles and get lost in the story of fictional characters. I find that I am frightened of returning to work because of the commitment I would have to make to employers. When your health is up and down, as mine has been, it’s difficult to see how you can possibly commit to a job and not have to take time off because of a flair up or a bad day. I don’t want to let people down; I did enough of that with all the time off I had at my previous job.
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?

Patience is a virtue...

I am not particularly an impatient person. I hate waiting for buses, waiting in line at the checkouts and queuing for the latest ride at the theme park (not that I’ve done that for a while). But it seriously annoys me having to wait around when it comes to having your health sorted. Recent evidence has been gathered to support the theory that immediate treatment for symptoms of Rheumatoid Arthritis is required in order to slow the progression of the disease. I strongly agree with the ‘nip it in the bud’ approach. However, in my experience, the NHS just can’t seem to pull their finger out of their rear ends. I have been quite lucky that up until now my treatment has been reasonably prompt. When the first port of call failed, Disease Modifying Anti Rheumatic Drugs, I was referred for round two of treatment, Anti TNF drugs (Tumour Neurosis Factor).When, again, this failed to work I was referred for further Biologic treatment, a drug given by infusion every 6-12 months called Rituximab. I have only received one round of Rituximab so far and when I went to see my Rheumatologist earlier this week she suggested I have my second lot as soon as possible, due to the very annoying flare up I am having at present.
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….

Life Bumps

Some rather strange lumps have appeared on my legs, alongside my shins. With frequent strange additions to my body these days (not as bad as three heads or anything) I am not overly concerned. It is just another thing I have to remind myself to get checked out on my regular visits to the GP. I swear I should have the bloody surgery named after me the amount of times I am there. Anyway, my left leg expanded to three times its size last week and I began sporting a rather attractive cankle so I decided it may be time to pay Dr Leg a visit.
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.

Last week a DJ saved my life

For so long I have struggled to grasp a sense of normality in my life. Things have been far from normal since my diagnosis now 18 months ago. Giving up things you enjoy is a massive downer, but part and parcel of having a disease that affects your immune system. I mentioned previously about having to stay off the alcohol, but other things I have had to consider are limiting my exercise to not put unnecessary pressure on my joints, getting enough sleep as late nights make me feel under the weather for days and generally dialling down the enjoyment (as any sort of fun leaves me exhausted). What a fulfilling life I must lead…
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).