I’m normally a positive person and try to remain upbeat and enthusiastic about all things, including illness. However, lately, I’m struggling to keep up with this positive attitude.
I’ve always managed to power through or try new ways of doing things while Paul is at work but recently, this has become a huge struggle. My energy levels have dropped significantly and I can’t think of a reason why. I’ve barely been out of the house and when I have, it’s been for no more than an hour or 2 at the most. Regular tasks like having a shower and getting dressed haven’t even been entertained on most days. I’m feeling very useless and also worried by how little I am able to do. My independence has always been extremely important to me. I will push to keep it for as long as possible, however, I can’t help but start to lose hope due to this latest dip in my health.
It’s no secret that my absolute favourite thing to do is to take Gus to the park. I love the fresh air, I love seeing Gus run around having the time of his life and it is a beautiful place to distract myself from everyday stresses. Recently, taking Gus to the park has been a huge chore to me. Obviously he still needs a good run around and I still enjoy watching him be a loon but the pain and exhaustion has been so overwhelming, I’ve not been able to enjoy it nor take him as often as I’d like. I can’t push myself around the park in my wheelchair and I can’t afford a motorised wheelchair either so I’ve had to struggle and some days, not take him at all. We have been once this past week and I’ve relied on Paul taking him out when he gets home from work or wearing himself out running in the garden instead.
It’s torture to watch others do what you were once able to do. It’s even more torturous to try and experience a part of your old life for just a while and end up worse off than before.
Aside from taking Gus out, I’m struggling so much more in all aspects of my life. Paul had to wash my hair for me the other day. Normally, if I’m feeling too bad I will just leave my hair but we had plans to go to my mums and I know Paul was looking forward to watching the football and having a few beers with Dave (my stepdad) so I had to ask him or help. I felt really defeated but I focused on the positives. I was still able to go to my mums as planned and I realised how lucky I am to have someone so supportive by my side. However, Paul works full time and more so I’m left alone a lot of the time. That’s been fine for a while but now my health is getting worse, it’s not so great. I’d never ask him to leave work to care for me. I hope that this is just a temporary set back and a full time carer won’t be necessary for a very long time.
Having bad phases/relapses can really affect you and you start to think about losing your independence and how much more you’re going to struggle to do things that have been challenging at best since becoming ill anyway. I’m hoping that I get back to my positive self soon and hope to see an increase in my energy levels too! Living with illness is learning about yourself, how you cope, what your limits are and growing to be ok with it.
I’m sorry this post hasn’t been a cheerful one but I think it’s important that people realise that illness doesn’t just affect your life once but continues to affect you in many different ways throughout the entirety of your life and you need to be prepared for both the mental and physical battles ahead. Always know that you aren’t alone in this.