Here I am again ! Cooeeeeee! Over here..the one with the slightly askew demeanour and slightly careworn appearance. That's what a 7 week school holiday break can do for you. Yes that is correct dear reader: I did say SEVEN weeks. Much as I love my children, seven weeks is a long time to fill and seems longer when you're not particularly chipper. There were ups and there were downs and at times it was a real struggle but I'm still here and ready for another day.
We made cakes, we decorated furniture, we went to fetes, we helped at fetes, we bought a lovely swing seat and we avoided, cursed and annihilated a lot of wasps (what good are they ?? ..hateful beasts). I managed to make it to two of the four wedding receptions to which we were invited and we had friends round for Sunday lunch.
I also cursed this wretched illness, cried and swore because I couldn't do many of the other things I longed to do with the children and never made it to the seaside which is only 15 miles away.
I did manage to get to the doctors to verify that I am not diabetic (though it is borderline), got my eyes tested and had a crown fall off whilst chewing a vitamin --- s*d's law ! These might seem small things to many people but they were on a list of things to do and at least I achieved them. You have to look at the positives.
And now we're back to the old routine with children at school, partner at work some days and me trying hard not to give into feelings of ill health and unsteadiness so that I can do the things that need doing and do some things which bring pleasure.
I've realised that since the relapse at the beginning of the year I have taken quite a downturn and lost confidence. Some of the feelings of ill health are in fact feelings of anxiety: fear of what will happen when I try to do something simple like going to buy a pint of milk at our local store (a five minute drive). These are not panic attacks but simple fear about what will happen based on other real incidents when I've felt genuinely faint or sick or giddy. I have to overcome these feelings or I shall sink further into the mire. I just can't do that.
My doctor is still pushing me to take the anti-depressants. I still hesitate. I have been trying everything I can to avoid taking them: will power, herbal stuff, EFT, positive affirmations, homeopathy. I am doing more and I am winning but it's a real struggle and I sense that I am weaker than I was before the relapse but I will not be beaten.
There have been other aspects of self-discovery but that will have to wait for another post.
For now I battle on and I'm trying to re-establish some kind of routine so I am more involved with the day-to-day e.g I had had to give up collecting my daughter from school but now I go however I feel. I'm hoping that gradually I shall get back to where I was a year ago. That wasn't exactly Olympian athlete standard (ha! ha! ) but I was more out in the world and less fearful of how I'd be from day to day because there was more constancy.
The past few months have been more of a roller coaster; having no idea how I'll be from day to day or even within a day. I have to admit that the uncertainty and extremes have got me down of late...and watching my partner and children being able to go off and do things I cannot this summer has really brought home to me how much I miss.
Maybe that was a good point about the Sertraline: that it 'took the edge off' as my GP said and I didn't realise the reality or severity of what was going on.
I do now.
Do I want to ? I don't know really but having now known it I cannot un-know it and even with Sertraline the knowledge will not evaporate.
I'm stuck and I'm sick of the struggle but I will come out of it....eventually.
In the meantime enjoy this lovely Gigliola Cinquetti song ' I Have Too Tender a Heart'.
Sometimes it feels just like that
14 comments:
Thanks for bringing up the loss of confidence thing. I've noticed recently that I'm much less confident than I was, and probably, for the same reasons you describe. I worry about what people will think when I'm clinging to my other half and weaving all over the place. I worry about what happens if that happens and I'm on my own and out and about.
So we may get some physical recovery but we have to recover mentally as well.
Can't advise you on the anti-Ds. I take 'em but would rather not. They do help with the pain and anxiety.
Hi, Cusp -
Thought I'd visit your blog after you e-mailed me this week.
Sorry to hear you've been struggling. I completely understand how hard it is to juggle kids and family with CFS. I think we all have a tendency to push ourselves harder than we should. I, too, hate to miss out on things, though I've come to accept that it's OK sometimes for my husband and kids to do something without me, rather than all of us missing out.
Hopefully, with the kids back in school, you'll be able to settle into more of a routine and rest more. I find that an afternoon nap helps immensely - it's become a sacred part of my daily routine!
Take some time out for yourself to rest and try not to be so hard on yourself. You're not alone!!
Sue
I hope getting back into a routine will help you regain some confidence even if some days those regular tasks are hellish... It is so hard to say "yes i can", or "no i can't" do something as a rule and it is good to keep challenging ourselves and our confidence. I hope that most days doing the school pickup is not too traumatic, if it is, well done for trying and you can always try again in a while.
I have also found summer has highlighted my limits (alongside providing opportunites for doing nice things comes greater awareness of what summer fun things other people can do so effortlessly) and i have had to watch my partner do so much without me and i have had to cope without her much more - in general i have done well but it has taken it's toll and i am also looking forward to a life of more routine, though i have done some different things that i will look back on happily.
You do so well to juggle being ill with parenthood as well as you do, no wonder it feels a struggle as so much must be beyond your control - always something that needs to be done i am sure - but i hope the rollercoaster can slow down for a while and you can feel a bit more steady.
best wishes, ashy.
I think without realising it confidence can be knocked relatively easily, especially by ill health. But it can return, unfortunately not as quickly as it went!
I hope you are being kind to yourself.
xx.
ye do 'ave a way wi' words though, Cuspie. 'Tis good t' be readin' ye.
(happy Talk Like a Pirate day)
My mind's bit too foggy to make a coherent comment here, so instead I'll send you *hugs* and let you know that I am thinking of you.
Take care of yourself.
I find there's nothing like being immersed in a world where "normal" people are busy doing "normal" things to get me out of sorts to say the least.
Balancing life with a chronic illness is not easy, especially I think one that leaves you exhausted after very little exertion compared to others.
Maybe anti-depressants would take the edge off it. But so might having people like us normalise your own experiences. To remind you that you are in fact ill and that's the reason you can't always do the things you want to.
It sounds to me like you packed a lot into your 7 weeks. I'd hate to see you pushing yourself too quickly to try and prove that you're normal.
When I measure myself against someone who is free from a condition like ours, who is relatively healthy - it's pretty easy to beat myself up for my 'failings' and to feel pretty low.
I try to measure myself against me, against others with my illness. But best of all I try not to measure at all. I strive to just do the best I can with what I have.
I know what you mean about the fear. But I don't think it's crazy to be fearful of making yourself more ill. It seems bloody rational to me.
Hi Jo. Glad you popped over.
You always seem to have such a balanced approach. I don't thnk I'm physically or mentally recovered (know you didn't mean I was either) but I do acknowledge that there has to be a psychologcal component to this condition -- particularly when you've had it for over 10 years. By that I DO NOT mean it is a psychologically based condition; only that such a change in circumstances must affect you psychologically and emotionally. I think that memories of particularly bad 'episodes' or situations are especially hard to shake off and have a way of eating into to you so that you are put off ven trying soemtimes for fear of what MIGHT happen...or maybe I just speak for myself. At any rate I find I have to occasionally remind myself that '....just because it went bad last time it will not necessarily this time...' and give myself a good talking to and a kick up the bum.
Hi SUE Good to see you here. Yes it is easier now that the children are back to school and there are more opportunities to go at my own pace [ i.e. v.v. slowly ;0)]. I do always have a nap in the afternoon. In fact I go back to bed and draw the curtains. Couldn't function at all without it.
Hi Ashy. Yes the summer just offers more opportunities for doing stuff and doing stuff that's more 'in yer face' --- i.e. people might be playing cards or dancing or anything in the winter but you don't SEE them. I found it all quite upsetting this year but then this is the first summer without my 'Lustral goggles' on which tend to smooth out everything. Thank you for your appreciation of how it is to try and cope with being not 100% and maintain parenting skills. Means a lot ;0)
Hi Kahless. I'm TRYING to be kind to myself but there is a part of me that's a tiny bit cross with myself and inclined to boot myself up the jacksy ! Not good really but there you are ;0)
Oh ah oh ah oh ah and a bokkle o' rhum Signsey, me old shipmate, me old cove, me old saltydog. Yep....the bastard illnees moit take me down sumtines but it'll take more 'an taht to turn me into some puny landlubber, oh ah oh ah oh ah
Change of accent to Lord Snooty
( Actually I think there could possibly be just a soupcon of Mock West Country a la Wurzels in here but ne'er mind eh )
Dear Azirca...don't matter that you're foggy. Your hugs are quite good enough however they reach me ;0)
Hi Rachel. Well when I'm not being bravefaced about it or jokey that's exactly what I think too and how I try to be.... but this summer has been really hard and really made me aware of what I cannot do with the children. I probably haven't been so poorly and unable to participate during the summer holidays for about 7 years and it does make me sad and angry and frustrated and resentful but I do try to stay positive and join in where I can and in that way I did pack in quite a lot in 7 weeks.
Thank you all for your wise, kind words and support
And you're allowed to have all those feelings! Didn't want to sound like "pull yourself together and think positive". Hope it didn't come across that way.
I found myself close to tears, actually quite close to just weeping, watching my friends and people I went to school with bouncing around dancing at my mate's wedding. People my age enjoying a good meal, chatting, drinking wine and dancing the night away. Whilst I struggled to just sit upright on a chair.
It's hard. It's often cruel. And I'm sending a wish to the universe that you can get a lot better and feel a lot happier, very very soon.
Hi Rachel. No it didn't come across like that at all --- know you better than that ;0)
Thank you for your positive wishes and hopes --- right back at ya and all the other PWME
Cusp, you and Signs introduced me to M.E. There is no end to what I don't know. Thank you for coming by and introducing yourself, so glad.
We all have to find balance, especially we women. I find that I take things quite differently than my husband, and it usually means guilt (on my part). I need daily mantras to get myself through the beliefs that shape my life. I actually have to practice undoing them. But over time I am feeling less guilty about . . . whatever.
I'm not saying that's what your post is about. Confidence is the issue, but I hear you saying you could try little steps to change your belief about going out, that it won't be like other times and you'll be fine. Just like anything, it takes practice I guess.
I'm sorry you have this blasted disease. I think blogging is pretty cool for working out ways of getting through things. I'm glad you're here.
Hello, Cusp.
I'm not sure how I missed this post at the time, but I did. I was actually here to say something about the moon (in a more recent post) but then found myself slightly side-tracked.
Interesting. It's a classic bind, really, and one I feel trapped in myself: take the drugs and "lose the edge" and - to my way of thinking - not know how one really feels? Or, eschew medication altogether and suffer the agony undiluted - with the consolation prize being an acute awareness of just exactly how we may feel.
I hope that came out clearly enough? I really resent the dulling of my mind and feelings, but finally accept the necessity (I didn't really have a choice) of a calming medication.
You may have particular issues, of course (certain drugs not mixing with ME, for example), but I'm hopeful you don't feel that taking drugs would be a sign of weakness or failure? You'd be beating yourself up needlessly if you did (although I understand the sentiment well enough).
How are you feeling now? Better? This post was a long time ago, after all. Does going to buy milk still hold the same fears?
God, it's amazing how our minds work against us, isn't it? You'd think they'd be on our sides. Tiring stuff.
Take it easy, Mrs.
Kind regards etc....
TPE
Well Mr Tiger you finally caught up ;O).. Thank you for a comment from your 'nicer self ' ;O)
Well it is a long time ago and it was written after a very long and very difficult summer holiday last year which was a vile year for all at the Cusp household anyway --- quite above and beyond anything to do with M.E.
No I def. do not see the taking of medication as a sign of weakness but I will only take as a very last resort (this may well be wrong but there it is). In the end I haven't taken any drugs for almost two years because I knew that much of the fear stuff was overcome-able through bloody hard work and grit and determination and that's how it's been really. I can now go for a pint of milk with little or no fear. Hurrah ! However, the limitations of life when you have two children to care for and an illness which demands to be heard are difficult. That can get to me and drive me nuts because sometimes it's all I can do to juggle the care of others who need my care within the confines of this malady and that leaves little time or energy for more creative endeavours. In the words of the Bard 'It's a bugger'.... and despite all I might say elsewhere, I cannot really call upon higher forces for succour so it's all down to me.
Kindest regards to you too.
Nice to be kind innit ;o)
Hello again, Cusp.
Well, it’s a pickle, for sure, and the absence of (useful) higher forces upon which you might call must surely be a mighty big nuisance. And being called upon to be your own higher force, of course, is sometimes simply not doable. If it ever is at all, in fact. (No, actually, that’s a bit negative: it is sometimes doable, I suppose, just all too rarely – in my miserable experience.)
It’s tippy-top news about you overcoming the fear, however (although I’m going to guess it can still make the occasional flashing and baffling appearance).
In all other areas, I tend to agree about drugs. Say, for example, I have a blinding headache. No drugs. I want to know the level of pain I’m in. It has to become pretty historic before I’ll think of dulling the aches. Emotionally speaking, however, it’s sometimes very useful – very urgently needed, in fact - to be shielded from any pains we may be feeling (although I’m loathe to resort to such measures). So it’s double hurrahs that you battled your fears into a smaller space and did so without medication. That’s not easy, as you’ll doubtless be all too wearily aware.
And all the while you’re dragging the explosive ME backpack up a mountain, waiting in certain knowledge for the next crippling detonation. I’m not sure there’s anything sensible left to say about ME, really, and I certainly won’t clog your head with witless imprecations or sympathies – “just keep going” (as if you have an option) or “it'll all be okay eventually” (a groundless assertion, sadly). I'm reduced to hoping that it isn't too awful for you too much of the time - which hardly sounds like a pep talk, granted, and I hope I'm not depressing you further.
I can certainly see that you'll rarely have anything left in reserve with which to charge into artistic endeavours. Ah Cuspini, that's going to hurt, I'm sorry.
I should get out of your hair and try to lurch towards a more recent post (I move slowly). Nice to have collided down here, though.
Kind regards and many golden biscuits etc....
TPE
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