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Living with chronic illness – two steps forward, one step back

18 Jun 14
Megan
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Since my birthday the other week, I’ve felt like I’ve gone from moving two steps forward to taking a giant leap backwards.

 

Homemade Birthday Cake (Gluten and Dairy Free)

Homemade Birthday Cake (Gluten and Dairy Free)

I know that progress is meant to be two steps forward, one step back but I feel that this has been more than one step back!

I feel like in terms of activity levels, focus ability and pain levels I’ve gone back at least one month maybe more.

On my birthday I attempted to do a day of work-related activity (I attempted to attend a networking event I would normally attend as part of my job). The trip into town had already left me feeling drained of energy and in a deep fog but I managed to focus for the first 30 minutes to an hour. After that fatigue and pain levels started reaching a point that I couldn’t remain focused. I managed to stay for 3 hours but realistically should probably have left after the first hour.

Since then brain fog, fatigue (exhaustion, whatever you want to call it!) and pain levels have been bad. I’ve been struggling to get up again in the mornings after just having got to the point I could get up at 7 am and function at a low level for most of the day. I’m needing to rest more during the day, and my pain won’t drop back down.

Overdoing it, not only on my birthday but during the week surrounding it, has had a larger impact than I was expecting.

This clearly demonstrates to me, and those around me, that I’m not ready to even consider returning to work full time. Unfortunately, it has also made me struggle with staying positive the last few weeks. I’m trying everything I can to stay positive and to continue to move forward. Reminding myself that the set back is temporary and that, as E keeps reminding me, rest is my number one priority. Everything else is secondary to that.

I need to keep myself on track to make sure I don’t fall into a depression. Staying positive is what has got me this far, I need to keep it up so that I can keep going!

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  1. The Girl in Yoga Pants June 18, 2014 at 1:44 pm

    I can so relate. I messed up and did too much the other day, too. Now I’m paying the consequences. Your husband is right, rest is the most important thing right now as you get through this setback – and you will! Keep moving forward, just move a little slower until you recover.

    • Megan S June 19, 2014 at 10:29 am

      Thanks Toni,

      I’m reviewing your article soon! From the quick look I’ve had, is it possible to maybe split it into 2? It is rather long. 🙂

      • The Girl in Yoga Pants June 19, 2014 at 10:41 am

        It would definitely be better split into two articles. 🙂 There was a lot of ground to cover.

        • Megan S June 19, 2014 at 10:51 am

          Great! If you want to play around with it, I’ll try and set it up so you can put them straight up as drafts today.

          • The Girl in Yoga Pants June 19, 2014 at 10:56 am

            Sounds great!

          • Megan S June 19, 2014 at 11:28 am

            Done! You should receive an email with a password, just change the password when you log in.

            You’ll be able to write the post and edit it up until I publish it.

          • The Girl in Yoga Pants June 19, 2014 at 11:32 am

            Got it! Thanks!

          • Megan S June 19, 2014 at 11:34 am

            🙂

  2. margie June 18, 2014 at 1:57 pm

    hope you start to fell better soon Megan-I do this a lot not sure I will ever learn. take care

    • Megan S June 19, 2014 at 10:28 am

      Thanks Margie 🙂

  3. jpeggytaylor June 18, 2014 at 8:13 pm

    Oh Megan, I think just by sharing your setback with others you have done a positive thing. This is so easy to do with ME (and associated conditions). Realising limitations is one thing but knowing just the right time to try and move on to increased activity is probably always going to be an almost impossible thing to predict. I guess it means that the rate of progression in increased activity has to be even more gradual. Hope you are feeling better soon 🙂

    • Megan S June 19, 2014 at 10:28 am

      It’s definitely difficult trying to work out when to increase! Especially when your medical professionals have very different views on the matter.

  4. eclecticoddsnsods June 18, 2014 at 8:46 pm

    I really feel for you and know how this feels exactly. I had family over and tried a new exercise and it really knocked me for six, going from periodic pain to constant pain all day and the fear of cramping which overwhelms me and depresses mei t is sooooo hard to feel positive and like one can move forwards. I have been given a volunteering job and really worry whether I am going to end up letting them down. We plod on don’t we because we have to and want to xx hugs

    • Megan S June 19, 2014 at 10:27 am

      Thank you so much! It is definitely something I struggle with, I feel the need to just keep moving forward but I know I should really be resting… so difficult!

      • eclecticoddsnsods June 20, 2014 at 6:03 pm

        yes pacing pacing…i am rubbish at times with it too x

        • Megan S June 21, 2014 at 8:48 am

          I think everyone is 🙂

  5. Deborah June 18, 2014 at 9:10 pm

    Wishing you the best as you rest and recuperate. I’m so sorry you have to go through this. Take your time and realize that lots of people are thinking of you. 🙂

    • Megan S June 19, 2014 at 10:26 am

      Thanks Deborah, I appreciate your thoughts.

  6. Jenn M June 19, 2014 at 1:10 am

    I definitely know how you feel. Whenever I overdo it, my symptoms go on full-blast and during my bad times I feel very depressed and discouraged. However, with plenty of rest and positive and pleasant distractions (for me, it’s crocheting and watching fun things on Youtube), I start to feel a little more better. Hope you feel better soon–sending virtual hugs your way! xx

    • Megan S June 19, 2014 at 3:22 pm

      Thanks Jenn. 🙂 Will be sending you an email soon. Hope everything’s going well for you at the moment.

  7. Claire June 23, 2014 at 12:49 pm

    “as E keeps reminding me, rest is my number one priority.”
    I hate it when your partner is so right, but you just don’t want to rest. It’s boring, you’ve done it already, it doesn’t work quick enough, and it doesn’t solve the emotional crisis at hand – hate CFS, it sucks and is boring and unfair.

    • Megan S June 23, 2014 at 2:38 pm

      Agreed, I don’t find it too boring because I’m constantly learning new things and I’m experimenting but it’s definitely unfair!

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