The last few days have been really tough. Mr M.E. has come back with a vengeance, possibly the worst kidnapping case for me in over a year. I’m not sure why. I had some coldy thing last week, which slowed me down, but I was still tootling around in a kinda fabulous way. But as I came out the other side my body just seemed to shut down and Mr M.E. moved in.
I have been bobbing along at my new equilibrium for quite a while now. I am not well but I have been consistently better. Yes, there have been wobbles but essentially I have been moving forward. A week like this one makes me feel like I have taken one giant leap backwards.
If you are a well person and you have a few days being unwell, it is horrible but you don’t worry about not recovering or it being the start of something else. That is not in your frame of reference. When you have a chronic illness, the fear of a dip turning into something else is in your mental filing cabinet. You can’t help it.
I can accept a few bad days. It’s not ideal obviously. I have felt really unwell. I am bored to tears. I haven’t been feeling well enough to do much apart from watch trashy television. My brain cells want to cry. I feel overwhelmed with all the things I am not getting done. I am isolated and lonely. But I KNOW it is temporary.
But what scares me is that I feel like I am restarting the clock on recovery. I know this is irrational. And not true. I also know the way in which I handle these dips is the most important part.
I become very introverted when I feel like this. (Which I know is hard for some people to imagine!) I don’t want to reach out to friends. I don’t want to talk about it with other M.E. friends on Facebook or Twitter. I don’t want to speak to my Mum on the phone. What can anyone say or do? Close friends and family just worry and feel helpless. Other friends offer platitudes – albeit well intentioned.
There are only two people I want when I feel like this: my husband and my best friend. But Husband is away this week and I don’t want to ‘bother’ him. He is really busy at work and to be blunt, there is nothing he can do. And my best friend has a really demanding job so it’s not like she is available for coffee even if I do call her. So I don’t. Now don’t get me wrong, if I was in real trouble I would speak up. I know these people love me and would do anything for me. But I prefer to just get on with it, knowing that it will lift.
I have tried to live in the moment and focus on finding some joy in each day. I have tried to be a compassionate friend to myself and not beat myself up for this unexpected turn of events; it is not my fault.
I am seeking therapy through writing. Trying to feel something productive has come out of these few days. But this is one of those posts that I will struggle to press publish on. I will be shaking. I will feel very exposed. I like writing articles that have a positive outcome. But I would be doing myself a disservice and others with M.E. if I wasn’t honest about how hard it can be. I will force myself to be brave and put this on my blog (and promise myself I will not remove it in a few days when I am feeling better!)
And I know how lucky I am. Some people are in this black hole space far more often than I am. Other people have horrendous challenges to deal with in their lives that make M.E. look like a walk in the park. I don’t think poor me. But counting my blessings does not always make it any easier to get through the day, or to accept another day slipping away where I am not achieving anything.
Today I am not fabulous Karen. Today I am just a girl trying really hard not to fall off the edge.
Today I am not strong, determined Karen. Today I have no fight.
Today I am not planning my future. Today I am just doing my best to stay calm and get through the day.
Today I am not funny Karen. Today I am just Karen.
Today I am not trying to achieve world blog domination. Today I am just blogging.
But who knows what I will be tomorrow. I know what is possible. I have had a taste of energy and I am determined to taste it again. Tomorrow I may be able to shove Mr M.E. out of the door and get back to the very important job of being fabulous.
How do you get through the tough days? And, of course, tough days may have nothing at all to do with M.E.
I think the only thing we can do is stop monitoring progress by days or weeks and look at the trend in terms of months and years. Yes tough fluish days come and go for the healthy people but I know exactly what it feels like to have even a hint of a symptom come back to haunt you: the "oh my god, here we go again" feeling. Have sought psychological help for this very recently because really, coping with this rollercoaster is against human nature and even the most positive of spirits is simply not designed to handle it.
ReplyDeleteHm, bearing in mind a virus started mine (glandular fever), I tend to give my body a three week 'grace period' to do whatever the fuck it likes after a virus (and it does do some weird, wonderful and horrible things). ME is also called "post viral fatigue" for the very reason you're describing - just after our immune systems have cleared a virus, we get fatigued!
ReplyDeleteYou have not convinced yourself you were making progress. You have made definite, tangible progress and believe me, once your body's on the road to recovery it really does surprise you in the best possible way: by bouncing back surprisingly quickly to where you were before and being strong.
xx
Oh Karen. :o( x I totally empathise with you here. M.E. is the black cloud that hovers over us and flitters across, casting shadows at times, isn't it?
ReplyDeleteAt the moment I am just in so much pain and it's HARD to be the perky, quirky fabulous person you know you are, when you are being rained s**t on from a great height, innit? x Dang it to heck and back...where's our medication brolly when we NEED it to work?
It WILL pas however, poppet-and it sometimes only takes a little glimmer of light in a day to make a rainbow again. x For me, I have no choice but to paste on a smile this weekend, as it's my baby girl's 14th birthday and I am hoping that I can do a good impression of "sunshine and sparkles" and hopefully paint enough colour to get me through it. It might even be enough to REALLY make me feel a bit better-if only temporarily. :o)
Many years ago I was in a REALLY dark and clouded place and couldn't see the point in living, or any kind of silver lining. Nowadays it's enough to know that there IS always a better time-in time-or a hug, or an "I love you!" (or some sparkly shoes or new red lippy) to give me a glimmer of contentment and hope.
So maybe that's what gets me through...not the umbrella of meds (which, let's face it, can be pretty rubbish) but the polka dotted rain mac of friends and family and the hot pink glittery wellies of a life that's "ok" and that fulfils me inside in the parts of me the illness cannot wither or harm. Feel better soon, sweetness. <3
I only popped off to get some lunch and I come back to all this blogging love! Thank you so much Ladies. There is so much wisdom in these comments.
ReplyDeleteI think you are so right Valentina. Focus on the bigger picture. And if I do that I will still be moving forward!
And I know this may sound silly BG but I hadn't really thought of it like that. I love the idea of giving the body a period of grace to do whatever it wants. And I promise to do my best to trust that I will bounce back.
And Molehilli. Thank you so much for your kind words. Sorry to hear you are having such a tough time. I hope you get to be sparkly on Saturday for your daughter's birthday. I am off to put on my polka dotted mac! xx
Thanks for such an honest post Karen. It was helpful because it made me feel not alone on days when I don't feel strong mentally or physically. I've learned to wait for it to pass (you'll read in my book about something I call Weather Practice) and that helps. I know that blue moods will descend on me and I can't punch them away or will them away, but they'll pass through on their own. While I wait, I try to be nice to myself.
ReplyDeleteI often say that when a well person gets sick, they don't have to deal with that fear of "is this the new me." We have to live with that all the time. It's tough, that's for sure.
Again, thanks for your honesty. It helps all of us.
Hello lovely Toni. Thank you so much for your comment.
ReplyDeleteIt's comforting to know that even very strong people like you have tough days.
I often wonder why it is so hard to be nice to ourselves. I would never put the same expectations on someone else in my situation.
I always promised myself I would try and be honest in my writing. And now there are all these lovely comments I'll have no choice but to leave the post on here!
Thank you so much for this honest post - it reflects what I am going through right now too and it makes me feel less alone.....going through a deep dip of ME can make one forget all about the high's and the recovery, the body has changed, the progress has happened and yet sometimes, it can feel as though we are starting all over again!!!
ReplyDeleteI have to learn to think of this in terms of months and years and not days and weeks too, thank you Valentina for that :-)
Sending you a big big hug Karen and much love xoxox
Hi Karen,
ReplyDeleteI just wanted to say how much I really appreciate your honesty and courage in writing this article and I am so sorry you are having a tough time. It almost made me cry reading it because your thoughts and feelings exactly mirror mine of a few weeks ago. I have had my worst relapse to date this summer and feel like I have slid right back down to the bottom of the ladder that I have been climbing since M.E kicked it in 5 years ago. Every comment you made stuck a chord with me and it helps to know that others also feel this way. I would love to have some wise words to say to help you get through the tough days, because your words helped me get through some of mine recently, but I can't tell you anything you don't already know really! I just try to take it day by day or even hour by hour, be kind to myself, accept help offered, stop agonising over what I may have done/not done to trigger it, and tell myself it WILL pass and better days will arrive soon. This week for me is better than last, only by a tiny bit but a tiny bit is a step in the right direction and helps me feel more positive. I am sending you all my best wishes and buckets (make that skips!) full of energy your way and the better days will come back for both of us x
I am overwhelmed by everyone's kindness. Thank you so much.
ReplyDeleteNeeta I'm sorry to hear you are struggling too. And right back at ya with the hug!
Alison, your words are wise. Even when we already know something it seems more powerful when someone else says it. But I'll still accept the bucket load of energy too if that's okay!
Here's to better days for all my blogging friends who are struggling right now. Love and energy to you all...xx
It happens to the best of us! The highs & lows, the trials & tribulations of m.e. I'm sure u will pick up again soon! There is no shame, no point in beating urself up, go with the flow and just be. Worrying makes it a hundred times worse. You are strong & nothing will squish that spirit of urs! You have been improving so much I'm sure perhaps worries about the potential move have been playing on ur mind also. Settle on that sofa of urs! X
ReplyDeleteThank you for your kind words Vikki.
ReplyDeleteYou are so right with the worry. I'm doing my best to just be. Although not very good at it!
Best mate has some free time this afternoon so trying to get it together to meet her for coffee. Think it is just the pick me up I need.
Then back to the sofa!
Hope you're not 'too' bad at the moment. Here's to keeping our spirit strong....xxx
Hi Karen,
ReplyDeleteHow do I handle these times? EXACTLY the same way as you only no as well possibly! Failure your not!
I too don't want to make contact with people when feeling like that, why ? because I only want to show my true personality & not the M.E. influanced shadow of myself! & I suspect your the same.
It's writing for you & artwork for me that avoid the black hole! As you no doubt can tell writing isn't my bag! You do a super job describing things!
Make the chat room a substitute for your husband whilst he's away & talk to us anytime, I'm sure I speak for everyone there!
Take Care x
Virtual hugs, kisses and blog comments all in one day Rog, you are spoiling me! Thank you so much for sharing your thoughts.
ReplyDeleteThe writing is definitely therapy for me. I always feel better about everything once I have written about it. It's almost as good as a husband or a best friend!
Hope the artwork is keeping you from the big black man flu hole. Love and energy...x
Hi Karen,
ReplyDeleteThis was one of the most beautifully honest posts I have ever read from someone with M.E. Writing is one of my biggest therapy forms on days filled with black clouds. With this illness I never know how I am going to feel from one hour to the next.
None of this behavior is failure, despite how it feels. You are instead, a survivor of an illness that is not yet well understood.
I hope you feel better honey.
xoxo,
fragileannie
Hi Annie. Thank you so much for the lovely words, I'm really touched.
ReplyDeleteYes, writing is definitely therapy in itself and then all the wonderful comments and advice, they just make it even more amazing. There is a lot of love in blog land!
Hope the black clouds are not bothering you today...love and energy. xx
Beautifully written, Karen. Setbacks are so incredibly hard to deal with, sometimes even more so when they come after a time of improvement. I agree that sometimes the worst part is not knowing how long it will last. But I'm confident you will get through this and return to a better state again. Hang in there... there are so many people who support you in *whatever* state you are in. Hugs across the sea. :)
ReplyDeleteHello my beautiful brave friend.
ReplyDeleteI hope with all my might that any moment now 'Fabulous' Karen will strut from underneath that black cloud in a pair of fabulous (if low heeled) shoes to kick the arse out of Mr M.E. Until then, whatever you need............
I don't know about ME but I know all about black clouds and constant exhaustion - its a bugger. Sympathy, empathy but no platitudes - you know the sun will come out but its a crapper whilst it pours (I am a bit wet myself right now - in need of that polka dot mac !!). Like you I am only starting to be `real' and try avoidance if I am not `me' - but this is me so I am getting better at sharing both sides - only taken a lifetime ! Thanks for the honest post. Hope coffee perked you up <3
ReplyDeleteSo beautifully written Karen! You nailed it!: That is exactly how it is. I just went through the same thing. It lasted two weeks! That is a long time for me these days. I am my bad-ass self again, and you will be too! I just wish at least ONE CFIDs person would comment on my posts about what I have worked so hard to achieve physically. In my last post about it, I begged for support even but got none. I try not to take this personally, but I'm afraid I do.
ReplyDeleteJudy
Thank you so much everyone for you wonderful support. I have tears in my eyes. Not those horrid ones but the ones you get when you are just so overwhelmed by people's kindness.
ReplyDeleteLaurel, you are so generously spirited. I know what you are up against and my little set back doesn't come close. Your thoughts make me feel so very humble. Thank you.
I am hoping to give him a little kick today Emma. I'm not sure I'm ready to strut but could maybe manage a stroll! (Everyone, for those who haven't realised this is my amazing best friend. She is my rock and if I am well enough today she is going to sprinkle more best friend magic over me and help me kick Mr M.E.'s ass.)
Dotti, thank you for being so honest. You can share my polka dot mac if you like. You're only tiny we'll easily both fit in there! Hope your clouds move away very soon. Yes, coffee and Emma helped and I am hoping that there will be a little more energy today.
Judy, it's great to hear that you are back to your bad ass self. And encouraging. If you can do it so can I. Not sure what to say about blogging and comments. I know from my own experience it is not always the posts that I think will be popular that are. Sometimes I post something that I don't think is that great and people respond really well to it!
Lots of love to all my fabulous blogging friends, you truly are amazing...xx
I have nominated you for a blog award. You can collect it here: http://emptydreamsdisplayed.blogspot.com/2010/09/my-favourite-blog-award.html
ReplyDeleteAah...thank you Bethany. How very kind of you.
ReplyDeleteThere is just so much love in blog land!
Popping over to your blog now...xx
Thank you for writing this. It really helps to see that others go through some of the same horrors that I do. -and get through it-. Don't worry about always being positive. Getting this out is positive for you and others. Really! Thank you, Patti
ReplyDeleteHi Patti. Thank you so much for your words of encouragement. And for reminding me I/we will get through it.
ReplyDeleteLove and energy...xx
Awwww, lovely Karen! I am sorry it is challenging for you now but I thank you for sharing it with us because now that I know you need some lovies I can stop what I am doing and send pure, bright, healing light your way. Watch out...it's powerful stuff and it's coming right at ya! :)
ReplyDeleteHello Miss Clearly Composed. You always make me smile.
ReplyDeleteThank you so much for the love and healing light. I can feel it working already! xx
hi karen,
ReplyDeletei hope you are feeling much better. your first sentence was , i feel like a failure and i understand it in context after reading the whole article but in my eyes you would always be the brave, strongwilled, caring, optimistic karen even when you go through tough times.
take care of yourself and have a lovely weekend
Hi Ayo.
ReplyDeleteWOW. What lovely words. Thank you.
I am glad to report I am feeling quite a lot better. Determined Karen is back! xx
I realise this is quite an old post now, but this sounds an awful lot like depression. i'm a sufferer myself, and what you've described is pretty much exactly a bad patch of the blacks (because the blues is not intense enough to describe the feeling). seriously. i could have written this myself. might just be worth considering.
ReplyDeleteHi Winelady
ReplyDeleteThank you for taking the time to share, especially on such an old post.
I have unfortunately experienced both CFS and depression over the years. For me there is a distinct difference in how I feel, when I wrote this post I was definitely physically exhausted. But of course, the mind comes along for the ride!
As it happens, I am now pretty well and feeling like this seems like a really long time ago.
I am sorry to hear that you suffer with depression, I know how tough that can be.
Thank you for taking the time to share.
Karen