Due to the effects of my illness I have not done paid work for nearly two years, and, quite honestly, I struggle to maintain my sense of self-worth. I sometimes wonder whether I am just a weakling. Perhaps with more will power and resolution I could get a job, and sail off into the sunset. I think that this feeling is exacerbated by the people I know who manage to work and study whilst suffering the effects of fatigue illness (this includes my partner, who has Fibromyalgia). I know that this is stupid of me, but, perhaps I am stupid now. I mean, I cannot read books anymore because I do not seem to be able to concentrate; and if I do, I am completely unable to recall ever doing so. I am not going to list the physical ailments which blight me, because it is the slippage of my mind I want to talk about here.
Just over ten years ago I began an Open University degree, which, because it is a distance learning format, enabled me to be a 'House Husband', looking after my two babies (as they were then). I was very proud to have gained distinctions throughout, and consequently earned a First Class degree. For the first time in my life this gave me the option - the confidence and credentials - of working with my brain (I'd always done manual work prior to that). I went on to work in the field of historical education (working within historic buildings) , and then - perhaps ironically! - became a disability advisor at a local Higher education establishment.
Now, here I am with a doughnut for a brain. I might seem reasonably intelligent and articulate as you read me; but I am not so in 'real time' right now. It is as if someone has held a piece of intellectual blotting paper to my mind and drained away my faculties. It is sapping my confidence, and I am scared. I want to get back my brain, but don't know how. My doctor reassures me that this function will return, and says that I am doing well, but I am not so sure. I am certain that I am not the only Chronic Fatigue sufferer who has cried whilst reflecting on their circumstances - I have tears in my eyes now. It's too hard to write when you're crying - and I might short-circuit the computer! Whatever happened to the stiff upper lip Englishman, eh. Bye.
Journeys begin with...
... small steps.
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8 comments:
OK I want you to read this several times if you have to. Just because you are feeling like this right now, does not mean its going to stay like this. The thing I have learned with CFS is that symptoms sometimes leave as quickly as they arrive.
When I first became ill, I was so tired (and my brain was mushy too) that I couldnt even remember my name. Its true, had I met you at that time I would not have been able to introduce myself.
And now, just 8 short years later :P, I not only have a full time job, I run my own teaching practice (I have 20 classical guitar students), and I blog a few hours a week. Oh and somewhere in between all that stuff, i try to have a bit of a life.
My life, such as it is, didnt happen overnight....it took many many many babysteps to get here, and I still have a great ways to go.
You need to stop being so hard on yourself. Remember its babysteps. If you cant work, then try volunteering. There is always places that need help, plus it will do wonders for your own self worth.
I think your blog is fantastic, and eventually you are going to discover that its a great release for you. I totally identify with you and what you are experiencing. Eventhough, I am not in the same place anymore.
Raising kids and living with CFS must be 100x harder than what I experienced. I can't even imagine what thats like.
I think you are incredibly strong...and while you aren't feeling hercules-ish right now, soon enough you will grab on to something to get you through. Remember, that I am always just a blog or an email away~ if you decide that you need a friend to talk to.
By the way, you are not the only person who has cried, while reflecting on their circumstances....I still do that, when I am not feeling so good.
Thanks Laura, it does help to have the support and insight of one who has been where I am at present. Greatly appreciated!
Cheers ~ Colin
Anytime!!!
I know this is hard. But letting it get to you, is going to make this much more difficult.
When its bad, you need to just take some time to chill out a bit.
I am not sure what the climate is like where you are....but when I need to escape from my head (because i tend to overthink when i am not feeling good), I wrap myself in a wool blanket and sit on the deck and let the wind calm my thoughts (its autumn here). The fresh air seems to help.
Hello Colin, Nice to see an ME blog by a man, there are few that I know of . . . yup, the concentration thing is a real drag, I completely forgot my PIN number at the cash machine the other day, I had no clue and had to go away and come back later, am sure I looked like I'd stolen it! I just glanced through your posts and I am little concerned that your doctor has suggested a gym, obviously, you know what you can and can't do, but please be very careful! I am on old-timer with this illness and I don't know of anyone who has improved themselves by aerobic exercise, it would worsen them instead, just a word of caution, take good care, NMJ
Hi Laura,
I too have strategies to chill (I developed many of them, consciously, whilst looking after babies!!). Of course, I am English; so we have drizzle and clouds to reflect upon (only joking!). In fact, just stroking my cats, or standing in the garden can often make all the difference - and then I have two beautiful daughters to raise my spirits, and a very understanding and supportive partner too - so I am very fortunate.
What I do have to work on though, is my tendency to run before I can walk. 'Baby steps', that's gonna be my catchphrase (though, of course, I will stumble along the way, sometimes).
Thanks ~ Colin
Hi NMJ,
Thanks for your comments. I find the concentration and memory depletion the hardest thing of all to deal with. I have done the cashpoint thing myself, so I completely empathise with you on that :).
Re. the exercise: thus far my fitness 'regime' is cetainly improving the way I feel, and has been positive. I do know a CFS sufferer - now recovered - who used this form of exercise as part of her recovery programme, and recommended I do the same. I am taking things slowly, and with my martial arts background, have a good vocabluary of warm-ups, cool-downs and stretches, which I use liberally.
Having said that, I do respect your experience and counsel, and will certainly consult my doc. and instructor about this. If I can sustain a certain level of activity I would really like to start Aikido - 'the art of gentle mayhem', as it has been described. This uses others people's force against them; redirecting it so as to invite them to tie themselves in knots. It is not strength-based, and would, I think, be really rewarding for a whole manner of reasons. Maybe this is a long way off, but that's my goal.
Finally, do more women than men suffer from fatigue illnesses? I would be interested to know.
Thanks ~ Colin
Colin - re: the gender question. Statistics show that women are more likely than men to have CFS (and MS, lupus, etc). However, it is not as dramatic as a 90-10 split. My own brain feels like a sieve about now, so I don't know the exact breakdown. The public's perception is that this is a female illness, but that is incorrect.
I am always terrified of forgetting my PIN, and am lucky to have a card which acts like a credit card (I don't have to think to sign).
I know how you feel - My greatest fear is my brain deteriorating to the point I can't work, and I cry about my loss of intelligence (and other capabilities) more than I generally admit. I think you need to do that sometimes to release your frustrations and pain. And then you need to pick yourself up again and keep on going, because there are still beautiful things to experience in life.
I definitely agree that the sooner you learn to accept your current limitations, the sooner you will feel more calm, happy and capable, and you'll probably improve a bit too. I have found this to be the case over and over again (every time I relapse).
And before you go losing your sense of self-worth, please ask your family how much they think you are worth, and why they value you. I'm sure the answers will surprise you and will confirm that work or no work, you're an incredibly valuable person.
PS I think the brain exercises are a great idea, can you recommend me some? I have also recently been thinking I should try to actively teach my brain to use other channels to process thoughts to see if it lessens my mental impairment.
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