This is a guest post by Karen Cripps
Karen Cripps – aka Sofa Karen - writes at Sofa and the City: Living with M.E./CFS but still totally fabulous! She writes openly and honestly about the challenges of living with a chronic illness but has a sense of humour and a love of fashion which gives this blog a unique twist.
When you live with a chronic illness that there are no rules for (I have had M.E.* for the last 6 years), it is really difficult to know the best way to plan your life. How do you distinguish between being sensible about your health versus allowing self limiting thoughts – that inevitably develop after you have been ill for a long time – to sneak in?
The leap of faith
I want to start an MSc in Psychology in September. I applied a few months ago when I was in a good phase health wise. I wanted to be positive about my future. I wanted to plan towards being ‘Well Karen’. I wanted to take a leap of faith. I truly believed I was on my way to full health. Actually, it was more than that. I believed, I was just round the corner!
I don’t want to go back to my old career in the business world. Being ill for so long has changed me. I want to try something new – this is definitely a silver lining of a long term illness: the opportunity to go in a different direction, one which may not have presented itself otherwise.
I started researching careers in psychotherapy and psychology and decided on the MSc in Psychology as the first step. I did the application form. I went to the open day. I started a distance learning course in Psychology to prepare me. I got offered a place. I started envisaging my new life as a student. It was exciting.
The reality of the situation
When I started this process, I made the assumption that my health would carry on improving and that by September I would be well enough to do the course. This has not happened. I haven’t gone back to being really unwell but I haven’t really moved forward either. I am struggling with the distance learning course – I am finding the reading really hard. Not because I am stupid! But because ‘brain fog’ is a classic M.E. symptom.
So current thoughts are running something like this:
‘I really don’t feel well enough to do the course.’
‘I’ve already got a Masters so I don’t need to prove to myself I can do this academically.’
‘Why would I put myself under unnecessary pressure?’
‘It’s a step too far too soon’
‘I’m really enjoying blogging. I certainly wouldn’t be able to manage both. But doing an MSc has more kudos than being a blogger.’
‘I’m giving into the M.E.’
‘I don’t think I can cope with all the reading.’
‘I don’t think I can manage 6 hours of classes back to back in one day. Blah. Blah. Blah…’
Giving yourself permission to say no
And this is the trouble with boundaries. You don’t know where they are until you smash into them. Then you have to go through the painful process of giving yourself permission to not do the thing you were trying to do. And if you are a Type A, this feels like failure, every time. But then not pushing boundaries is not the answer either. Then I really would be giving in to the illness.
I have been through this cycle so many times in the last 6 years you think I would be used to it by now! A whiff of wellness and I start planning all the new and wonderful things I can do with my new found energy. I have started many new exciting projects. I have had to stop many of them as I have not been well enough. But every time I start something new, I learn something about myself or something about what I can manage within the limitations of the M.E.
Some boundaries can be crossed
I want to be that person who is open to new and exciting opportunities. But by being that person I have to accept that I will not get to the end of every opportunity road. And more importantly, I have to accept that this does not make me a failure. How else will I know where the boundaries are if I don’t push them? And every now and then a boundary keels over and lets me past, like blogging.
After only 3 months of blogging, it has become an integral and exciting part of my life.
But as I grapple with this concept, I can’t quite bring myself to let the university know I won’t be enrolling. It will be final then. I need a bit more time to accept my decision and to accept that I am not a failure. But I will get there. And then I will pick myself up and start pushing a new boundary. Like becoming the Carrie Bradshaw of the M.E. world!
How do you manage your relationship with pushing boundaries?
If you would like to read more about how Karen stays positive despite living with a chronic illness, check out her blog Sofa and the City
*M.E. is also known as Chronic Fatigue Syndrome. It affects many parts of the body, such as the nervous and immune systems. The most common symptoms are severe fatigue or exhaustion, problems with memory and concentration and muscle pain.
For professional advice on living with CFIDS & FMS in the United Kingdom, please visit The ME Association.
{ 1 trackback }
{ 36 comments… read them below or add one }
Hello Karen,
How are you?
Thanks for taking time out to guest post on the blog as well as a contributing to septembers edition of the life skills magazine. You are an amazing & inspiring lady. You’ve also got a wonderful blog.
You’ve touched on an important subject and i’m of the opinion in order to make progress or experience personal growth or development, you’ve got to push boundaries.
Can I also say you’ve pushed the boundaries with this guest post (remember we discussed the magazine first and guest post later on but you gave a double whammy! lol!!!).
I never knew what ME was till 4months through dominique small who shared her knowledge first hand of living with ME and provided the opportunity of connecting with other bloggers through the interview, magazine and column.
Although the blog is still in it’s infancy stage, you are welcome anytime to create awareness, guest post ….. because it’s all about creating a purpose driven life.
Oh!!! One more thing it was ‘airy fairy’(laugh) and i loved it!!
Do have a lovely day.
Hi Ayo.
Thank you for such a lovely welcome and comment. (Smiling and blushing at the compliments..)
I agree you have to push boundaries. What is the alternative? If only it was easier to accept when some boundaries won’t let you past!
That’s interesting what you say about creating a purpose driven life. I think blogging is giving me that. It may not be the activity that I thought I was going to get purpose from but isn’t that great thing about experimenting. Sometimes you find a wonderful surprise. And now I get to talk about ‘airy fairy’ stuff any time I want!
You have a lovely day too.
Karen
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Hi Karen,
Thanks for sharing. What an incredible, eye opening perspective. Managing that inward self talk is essential no matter what we are up to. I think everyone can relate to that no matter where they are in life. I do believe we have to be constantly pushing boundaries… we are here to create grander and grander versions of ourselves. As long as we are pushing boundaries, that self-talk is going to push back. I have to constantly replace it with self-talk, visualizations and affirmations that support me. We can all expect starts and stops and ‘OOPSES’ as we evolve… creating ourselves anew is zig-zag path not a straight line.
rob white´s last blog ..Creating Money Matters – Not Reacting to Them
Hi Rob
Thank you for so much for your comment. It’s always so interesting to hear other people’s perspectives. And I totally agree, illness is not the only situation which creates challenges and boundaries. We all have those internal conversations. It’s good to know that I am not the only one leaning on visualisations and affirmations.
And I love the idea that we all have ‘OOPSES’ along the way. I am off to zig-zag my way into being a grander version of myself!
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Karen,
Thank you for this very insightful and inspiring post. You’ve raised some pertinent questions about how far one can go and how many boundaries can be crossed, when one is suffering from chronic health challenges. Your words resonate deeply….
And I love your authentic passionate style of expressing….brings a smile to my face every single time!!
Hi lovely Neeta. Thank you for taking the time to share your thoughts. It’s good to know that I have captured some of the challenges that you face too.
And it’s great to know I brought a smile to your face too! xx
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Hey Karen,
Fantastic blog, great reading well done for staying fabulous despite having such a horrible life changing illness. Paul.
Hi Paul. Thank you for the comment, it’s always good to get compliments.
And I always try to never let a little thing like M.E. get in the way of being fabulous!
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Hi Karen & more especially the readers,
I think you have a fabulous ability to put into words what most are feeling. Some blogs on M.E. can be full of doom & gloom or medical stuff, which is tedious for healthy & unhealthy alike. Not so with your blog! it still reveals a person living & breathing and not just a diary of a horrible illness. x
Hi Rog (or should I say Karen’s Cheer Leader!)
Thank you so much for your kind words. I know everyone has their own way of dealing with an illness but mine is to try and stay away from too much doom and gloom. And this is primarily for very selfish reasons. I like to use my precious energy for positive, rewarding and fun stuff. I truly believe this is better for my health. The more time I can spend trying to be fabulous the more likely I am to end up fabulous! xx
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Hi Karen,
This resonated with me: “I want to be that person who is open to new and exciting opportunities. But by being that person I have to accept that I will not get to the end of every opportunity road. And more importantly, I have to accept that this does not make me a failure.” Very true words. I can so relate to wanting to be that type of person, too, and I don’t have a chronic illness that tries to defeat me. I think it’s very important to try and push those boundaries, but at the same time, to accept that things don’t work out as you expected (accept failure), but that life goes on. There will be some things that you will definitely fail at and some things that you will succeed spectacularly. You won’t know which one unless you push yourself.
Karen´s last blog ..Just For Today Challenge – 31 Days To A Better You eBook Launch
Hi Karen. Thank you so much for taking the time to share your perspective. I like the idea that without pushing ourselves we won’t find out what we can succeed spectacularly at. When you look at it like that, a few failures a long the way is a small price to pay!
I intend to carry on pushing boundaries and search for new areas where I can succeed. Here’s to being open to new and exciting opportunities.
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Dear Karen,
I enjoyed reading ‘Boundaries…’, thanks for your honesty and openness.
Best Wishes,
Peter
Thank you Peter. I always promise myself that I will try and be honest when I write. This is sometimes easier than others!
Best wishes to you too.
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Hello Karen
I can so relate to your situation and have many times had ideas and projects only to be stopped by the limitations of my illness. It’s so frustrating but I agree that it’s worth pushing a boundary to see what is possible and what our limits really are. We still have to try and live our lives as best we can despite M.E.
M.E. changes all the time so maybe what we can’t do today we might be able to do tomorrow! Personally I’ve not given up and will keep trying.
Thank you for the comment Ros.
It’s great to hear that you haven’t given up. Like you say, we still have to try and live the best life we can. Here’s to being able to do more tomorrow than we can today!! x
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Hi sofa Karen, Can’t tell you how many times i’ve started courses when in a good’ish faze only to have to stop. I know a little about refexology, photography, sign language, all of which i would be fully capable of doing if i didn’t have this infuriating illness. Still I’ve had it for 20yrs now so you’d think i’d know better! I’m glad i’m not the only one. Keep going with your blog, its certainly helped me
x x
Hi Lana. That’s so funny. I’d never really thought of it like that…knowing a little bit of all these things. Just think what an interesting person that has made you!
20 years is a long time Lana, that must be really tough. I’m glad the blog is helping…even if it’s only in a small way. Just think, I’ve done 3 months of blogging now. That’s practically a life long commitment in M.E. terms! xx
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
Hi Karen,
Great writing as usual. I agree with the commenter who said you have such a unique way of putting things. Only those who have walked in these moccasins really know, huh? I hope you keep progressing, albeit in a start and stop fashion. Just think of it this way: you’re growing and learning through every challenge. That is the definition of progress. Good going, gal!
Hi Cinda. Thank you for the lovely comment!
I am definitely progressing and as you say I am learning and growing every step of the way. And it is not all bad. Some days are, yes. But some days are good and I still get to have some wonderful experiences. I consider myself to be one of the lucky ones. Some people’s recovery road is a lot tougher than mine.
P.S. Would it be okay if I swapped my moccasins for a fabulous pair of high heels!! xx
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
As always, sweet lovely Karen, you’ve nailed it. And I would also say that many of us can totally relate to setting challenges and not always being able to rise to them. I am certainly one of them and accepting that I am not a failure for not meeting every challenge I set for myself is not easy. But you also demonstrate that the journey IS the most important part.
petra´s last blog ..Blah- blah- blah And Emz Abz
Thank you Petra. It’s great to hear your perspective as you are somebody I associate with achieving a great many things – like a zillion marathons for example! It’s encouraging to know that you have this same battle too. Maybe to be successful, this is part of the process? (And note to self to try and get more from the journey instead of always looking at the end result!)
Sofa Karen´s last blog ..Guest post on one of my favourite blogswoohoo!
Hi Karen!
I began an on-line writing class last September when I was feeling ok (I have moderate ME); one assignment was due each week for the 10-week period; I managed every one right up until the final two, and then I simply ran out of steam. I can’t imagine doing anything more challenging than that – and I have 2 Master’s degrees under my belt, from when I was well!
If you need this type of challenge I’d suggest the type of program that will allow you to do one course at a time, part time, preferably on-line. There are so many options available these days, I’m sure you’ll find something.
Good luck!
Nicky
Hi Nicky. Thank you so much for the comment. These are very wise words. And words I can accept as you have 2 Masters, so you know what you’re talking about! Thank you for reminding me it is not an all or nothing scenario (I can be very guilty of looking at things this way). I will certainly take on board your suggestions. Thank you for giving me lots to think about.
Love and energy…xx
Hi Karen,
Thanks for being candid and share you story here. Many of us go through these type of life changing events and we need to push some boundaries and let some boundaries be.
Good to know more about you here!
Preeti @ Heart and Mind´s last blog ..101 Changes- Change 7- Watch Less Television
Hi Preeti
Thank you for taking the time to leave this comment. I know you are right. I guess I just need to learn how to let some of those boundaries be! x
Hello again Karen,
As suggested I popped over to read your guest blog. It’s so weird, it seems as if you are writing my life story too ! Since two years I have 2 study applications sitting at home, one for a 4-year schooling to be a life-coach / health consultant and a shorter one of 2 years as a massage / relaxation therapist… it is possible to spread the total period of training but I would still need to follow the courses in block of 4 hours each time. Quite a challenge… And then there is the processing and memorizing of the information, not quite easy with a brain that sometimes feels like Gruyère cheese… (and to think that once I had a demanding job) Lots of willing but not yet strong enough . At least not for the moment. And that brings me to my point. In my experience ME / CFS has been one extended exercise of ‘letting go’ and learning to ‘live in the moment’. Of course, we need to challenge our boundaries to learn more about ourselves and to check where we stand with our illness, but we should also be mild to ourselves if reality tells us it something is not possible today. We did not ask for this illness. Of course accepting this reality brings a lot of questions and doubts and maybe even a small mental set back… but ME / CFS is what it is and it and recovery is definitely not linear. I compare it with a wave, with highs and lows. At first the waves are so high that it is only about trying not to drown. As the waves get less high we might already manage to swim a bit. Till finally we reach a calm sea where we can choose ourselves whether we want to swim, dive or just float with the tides… Every move forward into recovery is a new boundary reached, just maybe not that big goal we set ourselves. But this does not mean we shouldn’t try, right ? If not today, maybe tomorrow or next year. We need to keep our dreams alive, they are the food for our soul ! Just don’t hold on to them so tight that you become unhappy when it doesn’t happen.
I wish you strength, believe, compassion and patience…
I also wish to thank your for your stories, they are truly great and inspiring ! You are a very talented woman and a sharpwitted writer. So how lucky are we that you will keep on having the time to write your blog !!! Yin and Yang, opposites but can’t be without one another…
Warm greetings,
Els
Oh Els. Thank you so much for taking the time – and using some of your very precious energy – to leave this comment. I love the description of the brain as Gruyere cheese! (I used to have a demanding job too…) And it made me smile to know you have 2 applications sitting at home.
Your perspective is so wise Els. My waves are definitely getting less high and that’s a start, right? And I agree we need to in some way keep our dreams alive. I just need to learn how to not hold on to them so tightly. Oh and to be patient. Something I have never been very good at!
Love and energy…xx
Hi Karen,
Thanks for this inspiring post. We all go through difficult times, but we have to push ourselves and push the boundaries. Thanks for sharing
Dia´s last blog ..How to become an emotionally intelligent person
Hi Dia
Thank you for the comment, I’m glad you got something from the post. And of course you are right, difficult times are not reserved for those with M.E! Good to know that we all have boundaries to push through.
Hope you have a lovely Sunday
Sofa Karen´s last blog ..Desperately seeking well persons thoughts!
This was engaging and inspiring. I love reading about how you negotiate with life and yourself. You gave me lots to think about here…thanks for that.
Clearly Composed´s last blog .. Balance In Action
Thank you so much. Yes, there does appear to be a lot of negotiation going on at the moment! And I love your pen name….x
Sofa Karen´s last blog ..One very stylish Veevee Blog Award!
Hi Karen,
You are fortunate to guest post on Ayo’s blog. He is the best. I can relate somewhat to Chronic Fatigue Syndrome as I have a brother who has struggled with it for years. Going after another degree is always difficult, especially with your current condition. Good luck with your challenge. It is clear that you are pushing your boundaries and that, in itself, is honorable. I must check out your blog now…
Best,
Bob
Bob Bessette´s last blog ..5 Steps to Prepare you for the Empty Nest
Hi Bob. Thank you for the words of encouragement. Yes, I feel very privileged to be guest posting on Ayo’s blog. I’m even hoping I might get invited back!
My heart goes out to your brother, I wouldn’t wish CFS on anyone. I hope he is in a good spell at the moment.
I think you are right Bob, I am pushing boundaries even if they are not quite the ones I thought I would be pushing! But I should focus on that. I think it will help stop me from feeling like a failure.
Thank you for sharing your thoughts. Wishing you a lovely Monday.
Sofa Karen´s last blog ..One very stylish Veevee Blog Award!
Hello Karen,
Second time around…
Your column got really stuck in my mind because it gently forced me to think about my own bounderies. Deep down inside I have known for while that I have been taken on to many activities. At first it was fine was because I was having fun and I have been feeling very well the past months. But lately I feel that I am loosing some of that energy so I know I need to rearrange my agenda, that I cannot postpone any longer a decision that I know I need to take. Since January, every Monday afternoon I do voluntary work at the reception desk in a doctor’s practice that works with people with low income and refugees with a temporary residence permit. I love it because it stimulates my mind and it gives me a purpose other than my recovery and not least, I get to be part of a wonderful and committed team.
Unfortunately by engaging myself to a weekly demanding activity it seems that I’ve bitten off more than I can chew… This morning after a very bad night of sleep it hit me: I have bumped into a new (uninvited) boundary !
So, I decided to allow myself to stay home today… and, I have decided to switch back to once a fortnight. For the ‘old’ me no need to say that this a yet another disappointment, but for the ‘new’ me: what an achievement. I am proud to see that she is taking care of herself, allowing herself to be who she is right now and that she knows it is alright to switch back when necessary !
Here they are again: Yin and Yang, keeping the balance…
Thank you for helping me see!
Enjoy a good day,
Els, x
Hi again lovely Els. I can associate with everything you have said. I am very good at biting off more than I can chew!
Well done to you for taking care of yourself and more importantly, for being proud of that part of you. Glad to hear that I in some way helped. Your comments are helping me too.
Here’s to balance and being comfortable saying no! xx
Sofa Karen´s last blog ..Sofa and the new City