As everyone knows from my most recent blog posts, I have not been the ambassador of good physical or mental health lately. I am happy to report, however, that I feel like I am starting to slowly feel an improvement in my depressive disorder symptoms and I am confident I can get this turned around.
I think I have finally figured out after over 20 years of being sick that you never get used to being sick and that chronic illness never gets any easier. Part of my realization lately and some of what I believe led to my emotional demise was finally, fully, accepting 100% that I am not getting well and that I will always be sick unless by some chance a cure is found. For years I have been saying that I am not in denial but I know now that part of me has always kept that fire burning that I could be the old me again. I keep looking for that person, striving for that person to come back – and it can’t happen. It physically is just not possible and by trying to force myself to be something that I want to be but that I can’t is only going to further ruin my health physically and emotionally.
You would think that after being sick for so long, I would know all the right things to say about what is wrong with me, would be used to waking up not feeling well and not being able to go and do as I please, and would adapt to this lifestyle as people adapt to whatever their “normal” is. But with ME/CFS, Fibromyalgia or whatever the chronic illness may be, that isn’t the case. I don’t remember what it is like to feel well but I can honestly say that I still have not adapted to having to live like this either. Every day changes, there’s no routine, no rhyme or reason and pain and sickness is the only routine in my life.
Admitting that I have been denying denial is hard but it’s important for my mental and physical health. I need to be strong mentally if I want to have a chance physically. Even though I have accepted the fact that I am NOT getting well, I still think it’s important to do whatever I can to take care of myself and I will still continue to watch what I eat and exercise when I am able. I don’t feel that acceptance gives me a license to say, “Screw it – I’m sick so why take care of myself?” I believe that doing what I’ve been doing has enabled me to continue working when I probably wouldn’t have been able to otherwise.
Speaking of working – I have also quit denying denial about my work situation and I no longer even browse through the full-time corporate office positions at work in the breakroom. Every day I would go into work before my shift would start and I would go through the folder of job openings and tell myself that one of these days I would be working full-time at one of the office positions at headquarters. How am I supposed to do that when I can’t work more than 12 – 15 hours a week now? I’m not giving up on myself and I haven’t quit dreaming and hoping. I still want to do things; I still have hopes and dreams. I just know that they can’t be unrealistic like what I was doing. I have been setting myself up for failure and only making my own life harder in the process.
I’ve always expected way too much of myself and that is a definite area of weakness I need to work on. I guess my mental stability hasn’t had any boost recently also due to the fact that I have been reminded so much of all of the things I need to work on. Feeling pressure from others plus putting pressure on myself to be someone and something that I just physically can’t be has been too much for me.
On this journey through chronic illness I find that I continue to learn more and more about myself all of the time. I am learning that regardless of what is said about me, I strive to push forward, I strive to make my life better and I strive to always be a better person. In order to be a better person, one must be able to look within and see their own faults. We never can see all of our faults but I think I do a pretty good job of working on areas for improvement.
One thing I know for sure – I am done with denial!
Thank you so much Sandy for this posting. It sounds like a carbon copy of what my life has been like. I’ve always thought the same – that one day, I’d be back to my old self. Either I would hit on just the right combination of supplements, diet and lite exercise that would work perfectly or a health care practitioner would find some program that would work miracles. Not that I don’t believe in miracles but with chronic illnesses, we don’t see that many.
I may get to the point that I am starting to feel much better – but one little upset can plunge me back into full blown FMS/CFS. Like almost 2 years ago when I fell on my front steps on ice and suffered severe contusions and ongoing pain. I knew then, I would take a step or two back in my battle with chronic illness.
I used to try so hard to pretend I was OK and not deal with the symptoms as I should have, not give myself time to rest or a pass not to attend a stressful event. Now I don’t sweat the small stuff as much and it has made a huge difference. I would stress over having to wake early to be at a certain place at a certain time for work. I’ve made changes in work schedules and dropped extra work which would have brought in more money but would have exacerbated my symptoms. I’ve said no to invites or special events when I knew they would only make my symptoms worse. Being stressed over how clean my house was, is now a thing of the past. I do the best I can without overdoing it. If I don’t get the help I need from family, I let the extra cleaning, I would normally do, go. It’s not a necessity.
People are going to say what they want about you – that you are lazy or a hypochondriac or whatever. I’ve learned you have to let that go and just live your life the best you can while trying to have respect for your body and take care of it. It’s all we can do and that should be enough.
We will always remember the earlier years when we were vibrant and active. To an extent, we will still have melancholy feelings over those times, which seem long ago now. But we can still be happy and bring as much joy into our lives that we can in small ways. Having good support is critical. Not all of us have supportive mates or family members, or friends who still want to be around us when our illnesses rear their ugly heads. But the ones who do stick by us are real gems and we should always appreciate them for truly loving us no matter what.
Lift your heads up, for there is life to be lived and joys still to be found!
Thanks for your post. I think acceptance is key at some level. It helps us to move beyond our illness. See my recent posts about resilience and letting go. I moving beyond denial helps us welcome a new life of opportunity that we never realized was possible or available to us. We aren’t meant to suffer our entire lives, we can find happiness even in the midst of pain.
Sandy – I am not doing physically well right now so this will be short and sweet.
I am VERY proud of you. Coming to the point of acceptance is never easy and sometimes not a one time thing.
I look at acceptenance as an action word. It is the ability to continually assess where we are and accept those boundaries and then create the best life we can within those boundaries, all the while never losing hope.
Sending you lots of love and hugs, my friend.
Whenever I read your posts I swear we are living on the same timeline in our illnesses. I’m going through a really bad flare up right now with my IC and what I believe is CFS but undiagnosed. I have all the symptoms listed, however my Dr doesn’t want to diagnose me with it due to the medications I’m on.
I also recently got the final letter from my disability claim through my job, after being reassessed and paid back pay, as well as 3 years (I think) of payments, they turned around what my drs said until they could get it to show that in their eyes my problems were mental (addiction, due to the times I tried to get off the medications I was to reassess my pain levels, but it was always so bad that I realized my pain was real each time and had to go back on the same meds again, or try something different), so they didn’t have to pay me anymore. Right now I have no voice, sore throat, swollen glands, bladder spasms, pelvic pain, horrible headaches, skin, light and sound sensitivity. I’m sure there are other things I can’t remember.
For anyone trying for disability, I came across a wonderful blog that I wanted to pass along to everyone. She has some great info on there on how they deal with claims and how we should deal with the companies, as well as SSD. I just wish I’d found it long ago when I was first starting my claim, so I hope this helps others http://lindanee.wordpress.com/.
Sending healing thoughts and gentle hugs, lynnie
I have to agree with Peter, acceptance is really the key, but you can always prevent a major illness if you are really conscious about your health