Today's post comes with a heavy heart, weighted down shoulders and so much exhaustion that finding words is a struggle, but I shall persevere as always. I am really struggling at the moment carrying around the sadness at the changes in my life, the guilt that ultimately comes with those changes and fear of the unknown future. getting up everyday and carrying on is tough, sometimes the fight is simply not in me - I mean all warriors in battle have to rest every now and again!
Changes are probably the toughest part of my illness, changes to my life and the way I see the world. I know that I am not alone in this. Everything from finding out who your real friends are through to feeling like you are almost housebound at times - they all have their consequences on our mental health. I know you are all used to reading posts where I am strong in the fight an I will give some tips I have found out that help, but equally today I am going to be honest as invisible illnesses need to be understood at am honest level.
Have you ever climbed a mountain?
I remember when I was younger, going walking uphill. I hated it, it was utterly unpleasant to me, I am not even sure why but it was the monotony of it that I didn't enjoy. As I have grown up I now love hiking, even last year climbing up too the top of a steep hill in Austria and watching a thunder storm roll in. I have great memories of these things, but they are now tinged with a certain sadness as I feel like I am constantly climbing up a mountain only I am never reaching the top. Physically I feel that stubborn pain everyday that you get with over exercise, but emotionally tackling a mountain every day with no end in sight is HARD WORK.
This is one change in me that I really hate. I miss the days when I would wake up with no climb on my hands, when I could enjoy my daily activities without the constant presence of a force I cannot see. So next time you are around someone who has a chronic illness, try and remember that they are climbing that frustrating mountain everyday, you may not see it, but it is there and a hug says more than a thousand words.
Oh how I love to dance
I am one of those embarrassing people that will dance everywhere and anywhere. I have danced by myself in the street, I used to be the first one on the dance floor in clubs and I even remember doing a waltz in a university lecture once - utterly embarrassing. Now though I cannot dance, I cannot even go out in the evenings to go dancing. The friends that I had who would come out with me have all gone, they got fed up with me replying that I couldn't come out and I don't blame them for that. Now evenings out are segregated to things that are important; weddings, work events, seeing my family etc.
There is no longer any spontaneity to my life, no longer the outlet for this and this has affected my personality in ways that people cannot seem to understand. I seem to have lost my sense of random fun and accepting that for many moths was very difficult. I had to remind myself everyday that my health had to come first, I am still the same hippi, animal loving girl I always was, just with a more relaxed life style. This has worked, but I sometimes still shed a tear for the girl I once was. If you have a friend who rarely comes out, is always feeling ill and is isolated....send them a text saying you understand, give them a hug or simply lend them an ear when they need it - that is the best thing you could ever do for them.
Knowing that your support network will change
I have always been an independent person. I was one of those teenagers that left home and then make my own way in the world. This has taught me many life lessons - not just how to boil an egg. I spent many years standing on my own two feet, managing money, my job, my health, living the way I wanted to, keeping a flat...the list went on. That was until I got so ill that I couldn't do this alone anymore and I had to ask for help. Trust me this is something I find so hard to do....I am stubborn...it has always been "I am fine, I am strong, I can beat it down". Now thought this doesn't quite work. When I am too exhausted to make a hot water bottle someone has to do it for me, when I have no strength left to get through another evening I need someone by my side to keep me upright and as I forget everything, I desperately need someone to help me remember what it is I am meant to be doing.
Knowing when I needed help was the biggest personality change for me and even to this day it makes me feel like I am a burden, now more than ever when I need more help than I have ever needed. The one thing I have to remember here is that I am not a burden to those who love me, I am still in this fight 100% and above all else I shall continue with my head held high.
Then there are the small changes that we will all make during our chronic illness journey
Along with the ones that really affect me here are some of the others. I want to point these out as they are all perfectly normal to feel from time to time.
- Personality changes due to the brain fog, loss of sense of self and fear of the unknown.
- Loss of confidence - I have never felt so little confidence as I have done through my illness.
- Changes to your living. This can be coming to terms with the use of aids, understanding that you can't live the same way that you used to, or even judgment from others.
- Changes to your finances. Buying chronically ill is not only an emotional/physical burden to carry it can also be a financial one. Loss of income, the price of treatment, buying different orthopedic bedding - it all adds up.
- Changes to your career path.
- Handling judgment from others.
- Coping with travel, commuting and driving. I currently cannot drive due to my medications.
Here are just some that I have found....what changes affect you the most?
