I have been chronically more than half my life not counting the joint hypermobility pain as a child. And the older I get the more I think we do not give ourselves a break.

Having a disability is really getting in the way of living my best life.

Isn’t that how we feel? If only I wasn’t disabled I could work, socialize, do things and have a spectacularly clean house. But that isn’t the life I have. And I have to cope with the life I have and learn to value pacing and what I can do.

Things I learned things I know

The things I learned the hard way:

Mental wellbeing is important if not vital to dealing and coping with chronic illness

I was great at ignoring my mental well-being because I felt the need to push through the pain to hold onto my career. But that level of pain has a price. And it wears you down mentally and emotionally. And then you just tank. And I now realize how very important it is to focus on that as part of my coping with pain.

Pacing is for good days and the bad days

Pacing is extremely difficult when you are trying to push through the pain to be ‘normal’… hell, it is impossible. And we pay the price for that. But when we can pacing can really help us with the Booms and Bust cycle that occurs when we ignore it.

I learned I really hated my ‘sick self’ and I just wanted to ignore it

No one wants to be ill. No one wants to be limited in their desires, ambitions and goals. And I refused to accept I was. Denial at its finest. This leads to worsening health when we ignore the illnesses we must cope with.

I learned some self-compassion

I truly had no idea my self-worth was so low and that I hated myself so much because of my limitations. This divergence between who I am and who I believed I had the potential to be… it is a sharp contrast and I hated it. I really had to give myself a break and not be so hard on myself. And lower my excessively high expectations of myself. Because, man, this is a rough road. And I should feel a bit of compassion for my struggle without guilt, blame, hate… all the things that make me feel worse about myself.

Things I know now:

I do not care if people judge me

I just literally do not care. I have not really been the sort that cared much for what people thought about me anyway. And in this case, I have to cope with this illness whether others validate it or not. So it just doesn’t matter.

Advocating for yourself

I knew I couldn’t work anymore long before I stopped working. And I knew because it just wasn’t happening. I missed work. I messed up and was spaced out when there. It was insanely stressful trying to think through the pain. But my insurance company never believed me. And so I would push myself. Until I realized I can’t push myself. Not with the way things are now. I can barely function at home. So I had to fight. Fight for my short-term. Over and over again. It makes me sick to think of how hard they tried to not help me at my worst. But I knew I had to fight because no one was fighting for me (aside from my family who always fight for me).

I know things can get worse. Because they have in the past. They are now.

I know how fickle and random chronic illness is. Just when you think you might be able to handle it all it falls apart. We have to really deal with the unpredictability of the future. We have to plan for the unpredictability of the future. We have to get our finances to the point of being able to live at our worst… not our best. And we have to know, deep inside, that our hard-earned coping strategies will get us through anything that happens.

I know that I can’t push through like I want to

I am pretty sick right now and it is hard to do the things I know are good for me. Like socializing. It takes energy and energy is something I am in a very low supply of. And don’t have much focus either… so hard to have conversations when you are spaced the hell out. I know I need to rest. But I am bored and I cannot alleviate that boredom because I am pretty non-functional at the moment. I want to do things. But I can’t. So I have to rest for now and accept sometimes functionality sucks. And that means reducing a lot of activities, unfortunately.

I know acceptance when things are rough is hard

I want more than I can have at the moment. I accept that. I accept I am really, really limited at the moment. But I have a hard time with it. The boredom of it all. The need for constant rest. The isolation. But when you are going through hell… just keep going. Eventually, things get a bit better. Or we adapt.

Anyway, I have been very tired lately. So dizzy it is hard to think or do things. I rest so much. And I can’t seem to find the energy to do the things I need to do let alone want to do. And I am a bit sad about that. I want more than… this. But I have to wait. Wait for treatment. Wait to heal. Wait until things get a bit better. And it is fine to feel sad about that.

I think in the end I have to:

Be myself- I am still here. I am still me. And I have to love the me I am limitations and all. And I have to like that person I am, sick or not. There are a lot of things I value about myself and slowly my self-worth is being repaired. It isn’t always about what we can Do but who we are inside.

Trust yourself- For a long time, I didn’t trust myself. Not with my suicidal depression. I was afraid of the places my mind went. Afraid I would fall off that cliff again. But I have to trust I have the strength to persevere. That I am stronger than I think.

Self-care– I have to remember the importance of self-care to manage things right now. Manage my mood. Cope with all this.

Value what I can do– I can still blog. I can listen to podcasts or TED talks. And I know I need rest and rest I will. But I will also value the little I can do. Actually, I feel very accomplished when I manage anything these days. And hell yeah I am going to feel victory at any accomplishment I have because it is so damn hard to just exist at the moment. So yeah, if I change the litter boxes? That is an accomplishment worth celebrating. I write a blog post? Bravo, my friend, I feel like I accomplished something.

I don’t want to just survive. Although, yes, I will survive. I want to at least take pleasure in the little things I can do until I can do a little more. And we all just have to do the best we can with taking care of our well-being and doing our self-care until things get a little better. And maybe then a little better than that. It is a process. We have to live our best lives within our limitations at the moment. That is all we can do.

See other posts:

The story we tell ourselves

Things I learned from depression

5 things I know about chronic pain

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11 thoughts on “Chronic illness: Things I learned and things I know

  1. I haven’t been any good at acceptance.  I haven’t even been able to say that I can see my limitations.  My self-identification has gone from “I’m strong.” to “I’m weak.”  What’s wrong with me?  Why can’t I realize that my life has changed and I don’t have a vote in how it has changed?

    I can still be strong.  I just need to find new ways.  As for acceptance, I don’t know how I will get there.  I’m still screaming and kicking and it’s been two years since diagnosis, the illness has been present much longer.

    I do know this, in America, it sucks to be sick.  Not only am I not healthy, but I am broke and overwhelmed with how financially disabling my illness is.  I can’t wear make-up on most days and I certainly can’t function enough to work full time.   No one wants to hear about my illness (not even my doctors).  It’s always frustrating to be sick.  America loves beauty and health and abhors the drag of chronic illness.

    Every holiday extracts a huge price.  I need a few days just to recover from all of the family festivities.  It’s worth it, holidays are one of the things I can look forward to and enjoy completely.  

    Still figuring it out …

    Liked by 1 person

  2. Ive had this 5 years and its turned my world upside down from being super fit postive outgoing hardworking laughing joking to complete opposite at first i was like no way your gonna be beat me i was strong struggled on then it hit me hard i went doctors for 1st time in years never needed to go but then i was there every week as the different illness started showing their faces … work began to suffer i started phoning in cant come day here n there soon it lead to regular couple of days every week in the end i had to stop work … the doctor saw me more and more went places to try get over it hoildays walks into the forests or chill out in it at least trying to beat the free time with active things to do gardening tidying up going for drive soon my illness took further turn for worse headaches the body pains nerves going crazy the sickness skin starting going into ezema started getting foggy on brain front doctors was hard work most things were in end i had to accept that fibro and cfs wasnt gonna be beaten over night i had to give up work had find ways to cope with my illness started reading watching videos on illness … thats on going but sometimes you cant watch or read so i learned things like warm blankets help hot water bottles showers yoga tai chi cutting certain types of foods is still on going im not cured but i do try pace myself alot better now unfortunely its still a battle it wont be easy but you will work it out somehow dark days and the light … depression becomes the by product of illness its not in your head its just how you let it beat you up on those days … i wish no one ever has to suffer this type of illness as its hard for doctors and specialists to understand it as theres no enough studies or research on it hopefully soon there will meantime try find ways that will help you in certain situations … enough of moaning lol takecare stay blessed head up gang ☺

    Liked by 1 person

  3. Oh my gosh I feel like you read my mind! While I was reading I kept thinking, wow, this could be me! I have just gone out on short term disability to focus on my health (as a friend said, that’s my full time job now) and try and get things on track. I worked longer than I should have, pushing myself even though I know I shouldn’t have, because I didn’t want to cause problems for others. Finally making myself a priority and not being so hard on myself. Thanks for this, it was a great read!

    Liked by 1 person

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