So What If I Have ME / CFS, I’m Happy

18 Jul
Photo by Jess B.

Photo by Jess B.

When this post is published, I will be getting ready to travel back to London.

As many of you know I have spent my time since October last year at my Mum and Dad’s up in Lincolnshire (for the unacquainted, East of England, 200 miles north of London).

Mr B works in the City in London and so we have been apart for this time. Him in our flat in East London and me up here in the countryside.

Mr B and I try and speak each night on the phone when we are apart. This happens most nights, except for those when Mr B is out being schmoozed by clients -‘it’s all for work Jess…’ Having been together for approaching 10 years our conversations tend to follow the same pattern:

Me: How was your day? Did you make money (he’s a trader at an investment bank)?

Mr B: Yeh a little, it was pretty slow tho. How are you feeling today?

Me: Yeh ok, not too bad. Pretty tired and achy/ headache [insert whichever dumb ME / CFS symptom that has spiked on that particular day]

Mr B: What did you do today?

Me: The usual, yoga, a little walk, some blog, oh and I had a bit of meltdown at lunch time….

Ah yes the meltdown. Now we’re getting to the point of this little sortie into mine and Mr B’s telephone time. I’m happy to say, although I do have a fair number of ‘meltdowns’ (you try having a chronic illness and see how you cope) they are becoming fewer as time passes.

However, for two (or was it three?) consecutive days last week, when asked by Mr B ‘what did you do today?’ Meltdown was mentioned in my response.

Mr B: Oh Grumpa, why? (Grumpa is one of his nick names for me cos apparently I’m [I used to be] grumpy a lot….charming – again you try being a corporate lawyer whilst unknowingly having ME / CFS. I think you’d be grumpy too)!

Me: You know, coming back to London, how I’m / we’re going to cope, what I’m going to do when I’m better…

Mr B: We will be fine, we will make it work. Stop worrying about it and will you please stop worrying about what you’re going to do when you’re better and just focus on getting better!

Photo by Jess B

Photo by Jess B

He has a point…

My sister picked up the baton here (or maybe she was first and passed the baton to Mr B, brain fog is preventing me from seeing the actual sequence of events). Lou bore the brunt of the meltdown.

Picture this. Me half way up the stairs in my parents’ house, tears streaming down my face. Pouring out my worries about London, my future once I’m well etc to Lou who, like most normal people, is a bit baffled how I was fine two minutes earlier when I left the kitchen and yet somehow, 2 minutes later, less than 3 metres away from the kitchen I am now in full meltdown mode.

So me perched on the stairs half way up and Lou on the step below, we enter Jess therapy session. Through my tears I garble my way through the thoughts whirling in my head:

Me: I’m so looking forward to being back in my flat with Mr B but what about Mum and Dad. Shouldn’t I be here with them?

Lou: No, they want you to be where you want to be, if that’s London then that’s what they want. Where would you be if you didn’t have ME / CFS?

Me: London

Lou: Exactly, in the nicest possible way, they don’t want you here, that’s not where your life is.

Me: I know I know, but..

Lou: No buts. They just want you to be happy.

Photo Credit Grafixer via Morgue File

Photo Credit Grafixer via Morgue File

Me: I want that too. I think I am happy

Lou: Well then that’s great

Me: Yes but am I allowed to be happy? Should I really be happy?

Lou: of course you’re allowed to be happy! Don’t be so silly! Allow and should don’t come into it.

Me: But if I’m happy with ME / CFS doesn’t that mean I like being ill, doesn’t that mean I don’t want to get better? Β What if me being happy now stops me from recovering?

Lou: I think it’s wonderful that you are happy. ME / CFS isn’t you. It doesn’t define you. It isn’t everything. It shows real strength of character to be able to manage to be happy when you’re in a really crummy situation, as is the case with a chronic illness. You should be proud that you manage to rise above your illness and be happy. You’re happy despite having ME / CFS. That’s good.

Me: But (do you notice I use but a lot…) if I’m happy now will it not prevent me from moving past this point, past ME / CFS?

Lou: I can see that train of thought but I don’t agree with it. Are you content with where you are with your health and life right now? No. Is it where you thought you’d be at 29? No. Is it where you want to be? No of course it’s not. You desperately want to move past this. We all know that. But you need to be as happy as you can be given your situation.

Me: True. I do want to get better so much.

Lou: We all know you do.

Me: I don’t want to give in to my situation and not move beyond ME / CFS.

Lou: No one can say you’re giving in to it. You’ve always searched for answers and remedies.

Me: True, everything I do is aimed at getting better.

Lou: Exactly, and if you can be happy whilst doing it, then so much the better.

Photo credit JessicaGale via Morgue File

Photo credit JessicaGale via Morgue File

Pondering all of this I thought I am happy. Today I’m going back to London to live with Mr B in the flat we own and call our home. This is what I have missed so much throughout my illness. The fact I’m going back doesn’t mean I’m better. Sadly far from it. And I am going to have to be very careful and strict and pace pace pace. But that’s a story for a different post.

Today let’s focus on the fact I am happy. And why shouldn’t I be? Today I see Mr B for the first time in nearly 4 weeks. My sister has another 4 weeks in England and is accompanying me back to London and staying for a few days to look after me. In ten days time Mr B and I fly to the Dordogne in France for two weeks holiday with my family in a villa with private pool, lots of delicious food (Jess intolerance friendly of course) and quality R&R. So what if I have ME / CFS, I am happy and I am not ashamed or afraid to show it.

Aside from impending holiday delights, I am happy because I have a man who loves me dearly and a family who would (and do) do anything and everything for me. I am happy because I love yoga and can practice it everyday. I am happy because it is sunny and the flowers in the garden are gorgeous. I am happy because I have wonderful friends who have stuck by me through this horrible illness. I am happy because I write this blog and enjoy doing it and connecting with you all. In short, I am happy.

Minor Footnote:

My memory and recall of the conversations with Mr B and Lou may well be different to how they would describe them. But this is my blog so I can interpret them how I want! This interpretation has helped me to be at peace with the fact I AM HAPPY!

How are you? Are you happy?

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20 Responses to “So What If I Have ME / CFS, I’m Happy”

  1. geocachingwithgeokids July 18, 2013 at 9:28 am #

    It’s nice to hear that it’s okay to be happy, I beat myself up about it too. Although logic tells me that’s a silly thing to get guilty about. X

    • myjourneythrume July 18, 2013 at 9:48 am #

      It’s not always easy to be logical is it? I totally relate to the feeling guilty, working hard at stopping that! Thanks for following πŸ™‚ x

      • geocachingwithgeokids July 18, 2013 at 9:57 am #

        Not now it isn’t. I’ve always had a logical mind, but since the latest “crash & flare” the illogical likes to take over. I too am lucky to have family like yours and a wonderful man too and they certainly make me happy. We also try and do things every week that keep us happy, I think that is the best way to keep the depression demons away. We have enough to deal with when it comes to cfs/fibro/IBS and whatever other underlying issues there may be, we need to remain happy. X

  2. currankentucky July 18, 2013 at 1:03 pm #

    Hahahahhaahahahaha… I am happy too… I know im sick and know my life has been flipped on its side but I am still me, I am content, I am grateful, I am happy, I totally get you re the whole “if I am happy has the illness won” sort of speak. I often get strange looks when I tell people I am happy, the sort where they question the working of my mind, afterall how is it possible to be happy and held hostage in your own home, but it is possible! Now back to the hehehehehhehehehehe….

  3. currankentucky July 18, 2013 at 1:07 pm #

    Reblogged this on currankentucky and commented:
    Love this blog by myjourneythrum.e. It can be hard for people to understand it is possible to be sick, to be a hostage in my own home 99% of the time and BE HAPPY!!!! πŸ™‚

    • myjourneythrume July 18, 2013 at 2:10 pm #

      Thank you so much for your reblog and lovely comment πŸ™‚

  4. triciaruth July 18, 2013 at 2:44 pm #

    You have to be happy where you can (even if overall you aren’t “happy” with where you are health-wise) as you need to be able to enjoy life in the now to be able to appreciate it and look forward to when you are happy and healthy!

    • myjourneythrume July 19, 2013 at 8:20 am #

      Exactly! It’s all about making the most of where are you right now so you can be happy πŸ™‚

  5. Saucy Hebraic Chrunch July 18, 2013 at 2:55 pm #

    Thank you for sharing this post. It helped me to process my own emotions!

    • myjourneythrume July 19, 2013 at 8:22 am #

      Thank you for reading and for your comment. So happy to hear my post helped you. That’s so nice to hear πŸ™‚

  6. Jackie July 18, 2013 at 4:47 pm #

    So people have actually criticized people like you and I because apparently anyone who is sunshine and butterflies in the face of illness is faking it. I’m happy to see a fellow “faker” is out there. *rolls eyes* Just because we are sick doesn’t mean we should become consumed by it! We all have our moments, but I prefer to have my “moments” be moments of sadness rather than being primarily bitter with the moments of happiness being a rarity.

    • myjourneythrume July 19, 2013 at 8:27 am #

      Yes apparently if we are happy and ill then we can’t really be ill…I’ve worried about others thinking that a lot over the years of being sick. What a lot of wasted energy! In fact being happy when chronically ill is about survival! It’s not always easy to maintain and yes I definitely have my sad times too, but thankfully always manage to get back to being happy.

      • Jackie July 19, 2013 at 5:14 pm #

        I just feel sorry for people who don’t understand it is possible to be happy in the face of illness. Life will never be perfect, so people who wait for it to be perfect so they can finally be happy will die disappointed and bitter!

  7. Ami Hallgarth July 18, 2013 at 5:40 pm #

    Jess your post made me cry a little bit just then!

    I know exactly how you feel and regularly experience similar emotional struggles myself.
    I read all of your posts and every time think I must reply because everything you write about also rings true with me and I feel that you articulate the complexities of this illness so beautifully – I want to compliment you on maintaining such an incredible blog!

    I was particularly impressed with your description of the part the Amygdala plays in M.E… how even just thinking about certain activities (like going to the supermarket) can worsen symptoms, aggravate pain and perpetuate the cycle.

    I have been doing the Gupta Programme since last October – have you heard of it? If not it’s worth checking out his website. His theory is that the Amygdala (unconscious mind) can be re-trained by interrupting negative thoughts about the body, recognising unhelpful thought patterns that can trigger, stimulate and perpetuate symptoms.

    I have recently had to give up beloved job as my M.E was getting too bad to carry on. As someone who has worked all my adult life, and was passionate about my job, this was not an easy decision to make. However, I have felt more relaxed and happier in the last 3 weeks than I have done since i got ill 2 years ago. I am still suffering pain, collapses, seizures, weakness, blah blah blah but despite this I feel HAPPY!!!! And yes, I do also question myself sometimes and wonder whether or not i should be feeling this, but on reflection, having M.E (and no I am no longer working) means that I can occasionally cook for my family, get my little boy ready for school, put him to bed, sit and talk to friends and last weekend went out with my partner and son to the park for the 1st time in soooo long it felt amazing! I wasn’t able to do any of this whilst working part-time as I literally had NOTHING left to give after a days work and spent my whole non-work time preparing or recovering from work, (often going to stay at my parents when things got bad) so family life was suffering massively.

    These little things that I used to take for granted now bring me so much happiness and appreciation it’s no surprise we feel happy!! This illness (for me) seems to be one of extremes – whether that’s being able to walk one hour and collapsed and unable to speak or move the next…to feeling desperate, frustrated, depressed and a failure to moments of sheer joy and appreciation for not feeling absolutely crap and being able to achieve little things that bring happiness …

    I think I have blabbered on enough now, but I just want to finish by saying THANKYOU for creating such a marvellous and inspiring blog that I thoroughly enjoy reading and keeping such a positive outlook despite the obvious (and less obvious) challenges you face with this weird illness that is M.E.

    I hope the move back to London goes as smoothly as possible and that your happiness increases even more now you are back with your husband.

    all the best
    Ami x

    • myjourneythrume July 19, 2013 at 8:40 am #

      Ami!
      Thank you so much for such a lovely comment. I’m so glad you enjoy my blog, that makes me very happy to hear πŸ™‚
      Tho I’m sorry it made you cry today, don’t want it to do that!
      I’m also very sad to hear that you had to give up your job. I did too because like you I had nothing left to give after the few hours I was still managing to work. It just wasn’t worth the struggle. It was a hard decision for me too, but health and happiness won out for me.
      I have heard of the Gupta programme, it is very similar to the NLP therapy I have had. Are you finding it helpful?
      You’re totally right that it’s the little things that are the real happiness moments, like going to the park with your family.
      Thank you so much for reading my blog. It’s lovely to know that it is enjoyed. Please do keep following and I look forward to hearing from you again soon.
      Jx

  8. Joy H Selak July 18, 2013 at 7:06 pm #

    Yes, yes, you can be happy and sick. Learning to be alone and keep yourself company can bring happiness. Having time to just stop, and look and breathe in all that you did not have time to notice before can bring happiness. Recognizing the faithfulness of cherished family and friends in such a tough time. The happiness one finds in the quiet life of illness is not the jump up and down, frenetic happiness, but the peace that comes from knowing who you are, being true to that and living in harmony with it.
    Absolutely great post!

    • myjourneythrume July 19, 2013 at 8:43 am #

      Thank you! And thank you for a great comment. You get it spot on with what I was trying to say. The happiness that can be found in the peace and life of chronic illness may not be one we would have chosen before falling ill but now it is so important to me and has taught me a lot too.

  9. Hudders July 19, 2013 at 10:40 pm #

    Another mind blowing post! As you know, I don’t suffer from this awful illness, however I can relate to your situation when my dad died. It was the same, how can I possibly be happy when my dad has just died, how dare I laugh etc etc. all I can say is that you are doing amazingly well…if you can live with the circumstances thrown at you, in whatever way they are, and still be happy..then that is such a positive place to be!
    If you are looking for perfection, you won’t find it! Just make sure you are living each day to the fullest you possibly can! looking forward to seeing you next week! Xxx

    • myjourneythrume July 20, 2013 at 8:09 am #

      Thank you so much for reading and for such a lovely comment. I have always admired your ability to take whatever life throws at you within your stride. Your resilience and strength is amazing. This illness has made me more resilient. Life does toughen you up doesn’t it?! I obviously saw you go through your Dad’s death but can only really imagine how hard it was and still is for you. But having known your Dad he would definitely have wanted you to be happy. I’m sure you’ve heard that a thousand times before but thought I’d say it anyway! Like you say to me, if you can manage to be happy even with all the junk that life throws at us then we are doing okay! Can’t wait to see you and your little trainspotter on Friday!

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