Firstly I'm sorry for not posting yesterday I was in to much pain to function but I'm back and fighting again! Today's post is all about how I hate living like I am in limbo, if you have a chronic illness you will be well aware of being left to your own devices.....it's the period inbetween appointments when you have to try and live but you have so many questions it becomes almost impossible.
Life also brings periods of limbo that have nothing to do with being sick! They can be stagnant periods when you can't get out of a rut, they could be relationship issues, money worries, moving house....etc etc. Life still goes on and whe your dealing with it and being ill it can feel like you will never get back to being you.
The times when you feel out of control.
Since I was diagnosed I have blahs to become more of a control freak! I have had to take control of a lot of aspects of my life. From how much I socialise, to taking charge of my care and all the way through to taking control of the disease itself as much as I can. If I didn't take charge it would lead me in a direction that would cause more problems in other areas of my life.
The issue with this is that it is easy to become blind to everything else that is happening around you. This has been me for a couple of months. I have had to take more control since my last flare up and because of this I have felt in limbo with the rest of my life. Sometimes it takes for you to become aware of this through shock, others making you aware or simply you knowing you need to get a grip on life not the illness.
So here's what I am doing to try and get through the limbo.
I have changed my medications.
One of the issues I have is that I have central nervous system involvement. The biggest issue I face is anger and brain fog. This has lead the way of my life for many weeks now. I have not felt like I am me because I have had to fight hard to keep working and some form of social life. Plus some of the medications I was on were also causing me brain fog. I mean fog 24 hours a day takes it's till, mentally, physically and on all relationships within your life. It's hard work for me and for others!
So the first way to take control was to look if my medications! I made two switches; one was to change my immunosuppressant to another form, the second was to begin a mood enhancing drug to control my stress, anxiety and anger. Both of which are working fantastically! For the first time in a long time I feel settled in my mind....my memory is worse, but at least my personality is safe.
I have begun to make firm dedications about my future.
When you in limbo you often forget to see a future for yourself. This is so tragic as we all derserve to have the future we want not what the disease has laid out for us. I want the house, I want to settle down with someone that loves me and I want to continue to work. So now I have those goals I can begin fighting for them again. Seeing them is the first step....then setting everything in place to have them. The latter being the hardest fight, but if it's worth it you give it 100% don't you!
Sort out my appointments to have a goal to reach to.
I find I cannot function in limbo without a date to work to or a time scale. A bit like project management...this is how I make sure I am in control of the disease. Life will often throw up periods of limbo that don't have a time scale...messing up the illness...but there is nothing you can do about that. Focus on the plans you can make and one of those is organising my specialist reviews!
Now that I have a date to work to I know that at least the illness will be handled even if the rest of the world has stopped turning for a little while. Having goals such as appointments, dates with lived ones, a holiday or even a deadline in work is a great way to keep the disease at bay!
