It is that time of the week again when I turn away from the negatives, for which there have been any this week and look towards the positives. I am in the grip of yet another flare up, this one seems set on bone pain, headaches and nausea....well why not add in some sickness to the mix? This has left e a little upset really because I was worrying what, if anything, I would actually achieve this week. Turns out though, that even in the grip of some of the worst arthralgia pain I have ever had I have accomplished a lot and I think that deserves a glass of wine......or in my case cup of tea.
Taken back the control of my care
As many of your will know by now, I have had a tough time of it at my hospital appointments of late. I have been overlooked because I wasn't on death's door, made to feel stupid ad to top it all off, I was called fat (well not those words but that was the implication). It was time to take back the control over my own treatment and health. Now one of the things that has put me off doing this before was the stress it would cause, but this time I really had no choice and I would have to deal with it in a way that would cause the least amount of stress. So where to go???
Well I made the decision to visit my GP straight away, no wasting time wallowing it needed to be fixed and that is where it would have to start. Although I couldn't get an appointment I asked for a telephone one so that I could talk through my concerns. My GP listened, gave me the advice I needed about what the plan would be next and made me feel like I had someone on my side. They would refer me to a hospital of my choice straight away!
Next I needed to do some research. One hospital had come highly recommended to me by a few people, so I rang my lovely friend Angela and asked her about her experience at the chosen hospital. She talked me through ho it works there, the level of care she has received and gave me the final push to head back to the GP and request the referral. Research is essential and there are many sites such as Health Unlocked that are great for giving honest opinions and I managed to find out a lot about the rheumatologists practicing there. It was invaluable.
Finally I discussed with my GP how long I will have to wait, what happens in an emergency etc. I sorted out my paper work from all my previous hospital visits so they are ready to go and wrote out ll the questions that I have for my new consultant. I have been given a very quick appointment in May which is great an the secretary was very understanding on the phone. For the first time in a long time, I felt proud of myself, I felt in control of the situation and I didn't feel alone in my care.....it is certainly the biggest achievement this week.
I have let go of some of my planning neurosis
One of the biggest thing for me over the past ten years has been planning my life down to the last minute because I want to do everything and make sure that I have adequate energy left. This is how i have lived for years and although it has meant that I have done some wonderful things, it has also lead to some weird fear of not having a plan in place. I will literally panic if I don't know what I am doing for the nest 24 hours.
So this week, looking back, there have been many plan changes and random events that have occurred and it is now that I realised that I have planned non of them. Last Monday was a prime example. I was not well at all on Monday and I had planned a full day out but I couldn't do it, there was no way which made me sad and miserable. However come the afternoon I managed to get some energy back, so I decided, off the cuff, to see if one of my good friends was around for a quick coffee. This is the complete opposite to my normal life, I don't just decide to do things. I met her for around an hour ad a half, we had a great catch up, the sun was shining and even though I couldn't stay out long the freedom of simply doing something unplanned was really welcome.
This has continued throughout the week. Not every day but there have been a few small plan changes that I have had to deal with ad unplanned things. It is nice to know that I am not confined by this anymore, because in effect that is exactly what was happening...I was living in the confinement of the disease rather than saying and doing what I can when I can.
I have allowed myself to rest more
Something that is very very annoying about my personality is that I never allow myself enough rest. I went for years thinking I could just push through everything and carry on....how wrong I was. This week has almost been a complete 360 because I have rested and thoroughly enjoyed resting.
I have actually achieved more through this. I have done more housework, I have finished the books I wanted too, I have spent more time healing myself so that I have more energy for when it is needed. Some of this must come from my change of planning everything and I am guessing some comes from just being so ill this week. However, sometimes we need a kick to head us in the right direction and for me that is the sofa, book and blanket.
I hope you have all had a great week!
