Wow. One day you're okay and then the struggle appears like a mighty rock that fell in front of you. Everybody is different and so are people's struggles. Trying to fight your struggle can take so long, especially when you cannot access what support you had. You actually think 'I can't do this anymore, I just can't.' The tears flow so hard it's like a river. A good cry can help - trust me, I've had a few. I'm not embarrassed to share how I feel.
Struggle and control
I do struggle a lot in circumstances that are out of my control. For example, bending down to tie my shoelaces causes me to be even more out of breath than before. Yes, I have slip-on shoes and ones with velcro. I do change things like this to make life easier but I haven't found the answer for that big struggle that is blocking my path at times. That big struggle can take days and days before it goes or I've learned to go around it.
My latest massive struggle has hit the 3-week mark which has hindered my exercise regime and I'm beginning to feel really sluggish. Worrying about it will make you feel worse and worrying is something I'm good at. I can even worry when things are going really well.
Hobbies for relaxation
A new thing that I've learned recently is to distract myself. Put some headphones on and play either your favorite music or some calm, relaxing music. Do something you like even if it's difficult. Try something completely different. I have started drawing and though the talent runs in my family, I am not particularly gifted. That said, it is relaxing and I can now see some improvement over the last few months. It certainly passes the time. Then I got on with knitting, making sure I got up every half hour so I don't seize up. It's painful, yes, but it has to be done, along with stretches.
I love a good challenge
It is a battle but I will never give up. It's definitely a challenge and I love a good challenge. Things knock you back but never give up - get back on your feet and move forward. We're here for a reason - maybe we can learn from others and others can learn from us.
I set up a plan for every couple of days, tick off what I have done, and write down how I felt when I achieved it. If for some reason I couldn't do one of the tasks I put a cross but I add a positive comment too. It just means next time I try a bit harder. Try setting up a plan - it works! It shows how much you have achieved even with the massive struggle. Think positive be positive. There is life after a diagnosis.
Have you taken our Person Before Patient Survey?