I know you aren't supposed to push yourself beyond your limits with CFS, I also know that in the "early" stages this is possibly even more important. However, so many of us do it (myself included) - so why?
I've done alot of reflecting regarding this - and for me personally it is a combination of reasons:
1. Non-support from family members (especially spouse)
2. The feeling that you might be on borrowed time (for lack of a better term), and therefore you need to do x,y and z if you can (in my case - pay down debts and save money).
3. Others opinions that if you drop out of work than you might actually get worse (yes, even my doc has mentioned this.........)
4. Here is the big one (and please don't slam me for saying it): The feeling that the only way you can STOP is when your body forces you into it.
(In other words, I don't have the "right" to stop working as long as I am functional - even if that functional level is greatly diminshed. That I don't feel my disability level is high enough to justify taking time off, etc.)
Now, I know these are issues (in ways of thinking, feelings of self-worth etc.) and aren't necessarily rational but I have a feeling that at some point more people than myself have felt this way (at least I hope so - LOL).
Here's the deal: If I were completely honest - I don't even WANT to work anymore (shudder I said it....), I feel that I am wasting valuable energy on a job that is exhausting, stressful, and that my mind no longer cares as much about. I used to be a highly motivated employee, who enjoyed coming into work, who thrived on the reality that I was doing the job of what should be multiple positions, and that people needed me and respected me. CFIDS took that from me, possibly when it took my energy.
So I stand on the ledge - trying to balance my life now - based on standards and ways of thinking from pre-illness and the reality of my health post-illness.
Even though I hear all of you out there (who I am SO grateful for) telling me all of these things I know are true - there is always that BUT in my mind...........
So honestly, if you feel comfortable sharing, what hurdles did you have to overcome (mentally, financially or otherwise) to make the decision to leave work? Or did it catch up with you in the end - just as I'm begining to see it will most likely do with me as well?
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If I'm honest there are a few echoes round here :O) because towards the end I was feeling that I just couldn't and didn't want to do my job anymore. It was a job I had longed to do and worked towards and was so happy to get but after seven years things at work had changed and so had I --- physically and emotionally and I vividly remember thinking I wish I did not have to do this anymore.By then that feeling was mixed with the physical reality if not physically being able to do it anyway but pretending to myself and others that I was able.
ReplyDeleteI did try to find other jobs but it didn't work out.
Now 'pop-psychcologists' would say 'Well, there you are....the body stuff was all in your head...it was your body's way of getting you out of work you hated' but they would be wrong: I was so fed up with the job that I organised freelance contracts and had a huge award waiting for me plus enough work to keep my going for at least two years after I left my job and the freelance stuff was brilliant -- stuff I'd longed to do, stuff I was meant to do.
I left work, started the new freelance career and then BAM !!! illness took over and I was knocked off my feet (literally). I'd been fighting feeling ill for about two years but the new career finished me off.
Like you I kept on keeping on because of fear, guilt, responsibility, loyalty....No good, my dear. None of it mattered and in the end nobody really gave a damn about me --- though people had implored me not to leave the old job and were very supportive and helpful about the freelance work but once I was ill I was no use: off limits.
I was terrified about money too. We had two very small children at the time and a mortgage but it worked out and we managed.
I should have guiven up far sooner. I wish I had.
Take care. Don't wait until your '...body forces you into it...'
I loved my job and loved the people I worked with. The year before I crashed was a busy one. I also felt thatI had no choice but to just push through. My friend Michael had been in a terrible motorbike accident in October 2008 and he very nearly didn't make it. I was sooo overwhelmed with grief from the possibility of losing him (issues to do with my partner Robert's death) that I took it upon myself to be Michaels carer. Initially that meant spending 4 months at the hospital (which was in another town) with him and then being his full time carer for a year once he got home. I also kept my job and was also clearly getting sicker myself .... but I pushed through because I couldn't let Michael down! Ironically in the process I really let myself down because I refused to listen to my own body ... a week after I finally no longer needed to be his carer my body just crashed!!! BOOM!! It was all too late, I crashed so badly I could barely move and spent weeks in hospital. At this point I was really scared about losing my job and what would happen financially ... I live alone, so my income is the only income! all very scary stuff .... but here I am ... still breathing, just scraping by with disability pension and for the most part housebound. I don't regret looking after Michael but I do regret ignoring what my body was telling me for months ... it was STUPID and in all honesty I cannot believe I will ever again be well enough to have any sort of normal life, and it's my own fault for ignoring the warning signs!!!
ReplyDeleteYep, agree with Lee Lee again. I didn't say that at the same time as all the above, our son was ill, , we had a new baby, my father had Alzheimer's, my mother was exhausted and near breakdown from caring for him and we had to help them move 100 miles to be nearer to us (and I had four friends die in the space of a 18 months)....but I just kept going because what else coud I do ?
ReplyDeleteI should have pulled back on the work or left to stay at home full time but I was afraid. Ended up like Lee Lee: spent first year in bed.
Thank you both so much for your honest and for sharing your stories with me - it means more than you can imagine and does indeed help me understand better.
ReplyDeleteI completely understand just keep going because what else can you do - but I hope I can learn from your experiences - oh dear, it certainly is a problem isn't it?
Thanks again!
I know i am coming to this post a bit late - i have been reading your posts lately but feeling that maybe i had little to say to help you, as i did not have family dependants, or many financial responsibilities when i got ill, only to look after myself.
ReplyDeleteSaying that, even i resisted for far too long in giving up work. I had just graduated a year before and started my first 9-5 job which i liked a lot(so much easier than the mish-mash of part-time jobs and further study i had been doing since i graduated). I was in the first few months of my relationship with my partner and i knew that if i stopped work i would have to move over 200miles away from her and live back with my mum. This i eventually did but i should have done it earlier. It is hard to give in, even though my sister had ME i did not really think it was happening and thought it would somehow all be alright if i just struggled on for a bit longer, despite what my body was saying. Having left two jobs over the course of my illness i can honestly say that none of us are irreplacable, they find someone else and things carry on without you. I felt i was letting them down etc but it was misplaced.
I know that sorting the financial stuff is going to be a nightmare but perhaps better to be able to deal with it before you literally cannot think straight from working yourself to the ground...
Hello :) New follower of your blog. I thought I would put my 2 cents in (belatedly!). I'm 24 and have *only* been dealing with CFS for a little over 2 years. Up until about November 2009, I had been pushing myself: working full-time, solely taking care of myself, trying to balance a relationship. I'm a planner and get easily stressed when "my future" isn't in order, so I was deathly afraid of leaving work and leaving things up to the fates in terms of my career and such. I also felt like if I could somehow make it through, that I should keep pushing (like you). But after reading so much information online about people who've been dealing with this condition for 10+ years, I finally broke down and decided that I must force myself to stop torturing my poor body and let it rest and recover. I was going to quit initially, but found that I could take 4 months off (unpaid) for medical leave and then come back. I came back to work part-time after those months to test out the waters and see if I could manage. It's been difficult, but not as terrible as full-time.
ReplyDeleteI know it's hard decision to make, especially in your case where you have so many things depend on you. It's been easier for me as I'm single and family has been able to help a little. But I had to learn to ask for that help before because before I decided to turn things around, I was stubborn and proud as hell to ask for help when I could push myself to the limit and still accomplish things.
But in the end, I think pushing yourself beyond reasonable limit is NEVER worth it. You'll end up bed-ridden and hating life; it's INEVITABLE and you know it. So you might as well push away all those doubtful feelings now while you still can help yourself and force yourself to rest and recover. Your health is your number one priority!! If you're not healthy and able, what could is having responsibilities in the first place if you can do nothing about it!
Anyway, if it makes you feel any better, after I took things down a big notch I finally feel like I've started improving a little. It's slow, but it's there. And most importantly I can finally even dream about one day getting better; I didn't believe it before.
So I vote: REST AND RECOVER! Sorry for the long post!!
I also just started blogging about all this, so please feel free to stop by and say hello :)
Thanks Ash and Dolcevita for your honest comments. My body is screaming to rest and recover - my bank account is saying something else completely (meek smile).
ReplyDeleteHonestly, don't know how much longer I can hang on so it may be a mute point to wonder soon anyway.
Thanks again!