Photography credit: Carli Jeen
Photography credit: Carli Jeen
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As much as we want it to, progress doesn’t happen overnight. As I work towards recovery from fibromyalgia and CFS, I am learning that patience and persistence are my biggest allies. When you have been sick for years, it is going to take a long time to rebuild your health; small, subtle changes build over time and eventually lead towards better health.

Change can be subtle and difficult to see

When you are living in the moment and stuck in a life of illness, it can be difficult to see and appreciate your forward progress. At times, it can also feel like you have stalled or like you are hardly making any progress.

This is especially true if you are also focussed on the end goal of where you want to be, as it can be easy to forget where you once were and what you used to struggle with. It isn’t until you take the time to reflect and look back, that you realise just how far you have come.

Making time to reflect

It’s always worth making time to reflect and I’ve found myself doing this again recently. Subtle changes can go unnoticed as they become your new normal and, as I went through a bit of a crappy time earlier this year, I wanted to take the time to remind myself that things are looking up.

A few months ago, I felt like I had stalled in my recovery. Understandably, this left me feeling frustrated. And this feeling of frustration was the catalyst behind trying hyperbaric oxygen therapy.

Unfortunately, as you may know, this treatment didn’t go well for me and I suffered a setback that took me around a month to overcome.

I came out of that situation feeling a bit despondent. I couldn’t help but think, “Is this it? Is this as far as I am going to progress?” I should know from past experience, however, that life has a habit of dragging you down before it then catapults you forwards. Thankfully, over the past 2-3 weeks, I feel like I have been on an upward trajectory again.

Noticing the positive changes

It’s almost been three years since I was diagnosed with fibromyalgia. And it’s been two years since my world was turned upside down and I physically crashed and ended up bed then housebound. As much as I would love to say that I have recovered two years on, it’s still my over-arching goal that I am working towards.

Having said that, there have been some positive changes to my health and abilities; some subtle, some more significant. Today, I thought I would list some of the signs that tell me I am getting better and my fibromyalgia and CFS symptoms are improving.

Progress is easy to overlook

As I mentioned above, it’s easy to overlook your own progress, so I enlisted the help of my husband and my mum and asked them what I can now do that I used to struggle with (or couldn’t do at all).

Although this is mostly a reminder for myself, I hope this also helps gives you hope that improvement is possible. If you would like to learn more about my recovery, you can read all my posts here.

33 signs that my fibromyalgia and CFS symptoms are improving

    • I can stand and brush my teeth and it no longer leaves me feeling exhausted either.
    • I can make up my own pill boxes with a week’s worth of supplements without getting muddled up and making mistakes (previously my husband did this for me).
    • Washing my hair has become easier to do, though I still only wash it around once per week. I can also use my hair dryer. This used to be the bane of my life! Washing my hair would completely knacker me and would be my sole task for the day. It would also leave me with post-exertion malaise (PEM) the next day.
    • I am now able to do a little bit of dusting and tidying around the house once or twice a week. Previously I did no housework at all because the PEM I suffered as a result of doing the tiniest amount meant it was not worth it.
    • I am sleeping better and, though my sleep can still be disruptive, I typically get around 8 hours (though this takes 10-11 hours in bed to achieve).
    • As a result of the above, I also wake up feeling better and– unless I’ve overdone it– I no longer wake up in agony and feeling like a tonne weight. Some mornings I am not in pain when I wake.
    • If I do wake up feeling sore, some stretches and using my ‘Serenity CBD lotion‘ soon improves this.
    • I am able to watch more TV and I can handle programmes and films that require a degree of concentration. Before I really had to limit how much TV I watched because anything that required concentration resulted in me experiencing PEM. This year is the first year I’ve actually managed to follow along with Game of Thrones without missing bits or getting confused (much to my husband’s delight I am sure!).
    • My concentration is better overall and my brain is less foggy. Though it is still very important that I pace mental activities.
    • I have gone from spending the majority of my days in bed, to spending the majority out of bed. Except rare occasions when I have chosen to overdo things, I get up in the morning and don’t go back to bed until nighttime.
    • On the days where I do need to rest in bed, I don’t feel anywhere near as bad as I used to and I am able to get up and get myself things– like a glass of water– if I need to.
    • I recover quicker from PEM if I have pushed myself and overdone things.
    • Unless I am really tired, I am also able to get myself up off seats and out of bed. Before my husband had to help me up most of the time.
    • And I am also relying on my husband less to go and get things for me because I am able to get up and do it for myself.
    • Sleep and rest feel restful (so long as I am pacing myself well). I still spend a lot of my day resting on the sofa but this is pre-emptive and my way of staying within my limitations, while I slowly build up my baseline.
    • I am getting through the day with more sustained energy (I would just like more of it please). Before I felt exhausted all day and then this progressed to having some energy in the mornings but being knackered by the afternoon.

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My fibromyalgia & CFS symptoms are improving: 33 signs that I am getting better. Click to read or pin to save for later

  • My step count on my Fitbit is steadily increasing and is more consistent; I am pacing myself more successfully.
  • I can lift the kettle or a jug of water. And now I can also do it without my arm and hand shaking madly (so long as I don’t do it repeatedly that is).
  • I can sit up for longer periods of time (I used to spend pretty much all day being horizontal). I, therefore, find travelling in a car much easier (I no longer have to put the seat right back so I am horizontal). Of course, I can’t do lengthy travelling on a regular basis yet and longer journeys still tire me out.
  • Some days I can take my dog out twice (on my scooter) without any payback. Doing it once used to be a challenge in itself and I couldn’t reliably go out every day either. I tend to go out once a day most days now. And like I said, occasionally twice.
  • I have been getting out my scooter and walking for a short distance during these walks (though not every day yet).
  • I can go up and down the stairs in my house a few times in a day. There was a time when I went down, then up only once in a day (and some days not at all). And when I was really sick, I literally had to crawl up the stairs with my husband helping me.
  • I am being more social without having huge payback. I also talk a lot more now.
  • I have been to the hairdressers twice this year. Though it does take it out of me, previously I was too sick to go.
  • I had a cold recently and got over it within a matter of days. Before a simple cold would wipe me out for about a month!
  • I think my immune system and gut are stronger overall and I can get away with occasionally eating things I normally avoid, such as eating some pizza every now and again. Before it would leave me feeing nauseous, sore and zapped of energy (I am sure that would still be the case if I overdid it and I don’t plan to eat these things on a regular basis; it’s not worth it).
  • I am able to go out to the garden and brush my dog every day.
  • I can sit out in the garden when the weather is nice and not feel completely drained by the heat (last summer I hardly ever sat outside because it made me feel really ill).
  • If I stick to my baseline my pain is low and pretty much background noise, though of course there can be exceptions.
  • In addition to qigong and stretching, I have started using weights to build up muscle strength (they don’t weigh much and it’s only for a couple of minutes but it’s a start!).
  • Movement can now help me to feel better in some instances (not always). Before, any movement was draining for me.
  • It’s taken me two years to get here but most recently, I am having days where I don’t feel ill. I have been dogged with the sense of feeling ill over the past two years. It varied from feeling like I full-on had the flu, to just feeling a bit under the weather. I believe taking Sentra AM and Sentra PM has played an important role in helping to improve this.
  • Most importantly, I now have a better understanding of my own limitations and I know when to stop and when to go.

I still face challenges

I still have my struggles and I continue to have challenges. There are still some simple things that I wish I could do. But, I hold onto the hope that one day I will achieve those things and I’ll be able to continue adding to the above list.

I continue to follow the Vital Plan Restore program and I take additional supplements too, but I think for me, the main thing has been consistency over intensity and slowing building myself up.

Click here to save $50 on the Restore Kit

My health is still fragile

Though much improved, my health remains fragile. I can occasionally get away with stepping out with my limitations but if I did it too often I know my symptoms would flare. By sticking to my baseline and gradually moving the goal posts, I have slowly been able to do more and my fibromyalgia and CFS symptoms are improving.

I know there will still be many ups and downs to come, but I hope my symptoms will continue to improve and my health will only become more stable over the coming years.


Have you noticed any subtle changes with your health? Let me know of any improvements you have seen in the comments down below.

 

Author

Hello, I'm Donna. I was diagnosed with Fibromyalgia in 2013 and started this blog shortly after. After my health declined significantly the following year, I decided to become my own advocate and searched for answers. It took two years but, in 2016, I finally discovered I had Lyme Disease. On February Stars, I share my personal journey back to better health; discussing what has helped me and the mistakes I've made along the way. I also cover topics on self-improvement, managing symptoms and living life to the fullest with chronic illness.

16 Comments

  1. So great to hear! I’m in my second month on the Vital Plan Restore Program and I am beginning to see some improvements. I needed to read your list today – to remind me to look at each little improvement as a step forward and not focus on an end game of total healing. Progress is progress!

    • Thank you, Kim. I can be guilty of becoming too focussed on the end goal and, to be honest, I find it more of a hinderance than a help. I am so pleased to hear you are beginning to see some improvements. Fingers crossed these continue for you!

  2. Thank you gives me some hope that my pain flare will improve eventually & that I can lead a normal life 1 day. Need to seriously need to learn to pace myself.

    • Hi Maria, I think we all have to hold onto hope; it’s what keeps us moving forwards. Pacing is definitely key. I always sucked at pacing and it wasn’t until I learned about the concept of baseline (which incorporates pacing) that I really made progress. Check out Toby Morrison CFS Health on YouTube– he has some good videos on the topic.

  3. Thanks for sharing…I have been noticing the small things too recently…like being able to have a conversation over coffee with a friend and not walk away nauseated and needing to lie down. It is a joy to notice!

    • Thanks Kate, that’s great that you are seeing improvements too! So pleased for you that you find meeting a friend much easier now. That’s a really positive sign!

  4. This is a great idea for a blog post. It’s so easy to get caught up in what you “can’t do”, how bad your pain is, how much you’ve lost that you lose sight of what you CAN do, what you can do thats you couldn’t a few months before etc. 33 things is SO HUGE! I know I am seeing a slight shift in my own health stuff and its easy for me to not always see it because of how bad my pain still is but then Im able to walk with a walker in public for the first time since April 2015 (no wheelchair…this never happens) and I realize that yes…I am doing better than I think. I had a terrible doing HBOT myself so I hear you on that. Keep up the hard work lady!!!

    • You are so right Genevieve, it’s easy to get bogged down with the cants and all the negatives. It’s such a positive experience focussing on the cans. Thank you so much. That’s great you are seeing small changes. Here’s hoping they will build up in time and you find your pain reduces. That’s so awesome you’ve been getting out with your walker 🙂 I’m sorry HBOT didn’t work out for you either, but in a selfish way I’m a little relieved as I thought it was just me being weird that it didn’t help!

  5. It’s so great to read of the things you’ve seen improve, Donna. Though our illness are different in name and many of the ways they may manifest themselves, so much of what you wrote as struggles I could relate to. It gives the rest of us hope to see that both small and big improvements are possible, that healing can come in small waves. Much love to you!

    • Thanks so much for your support and kind words Kami. It’s a slow road but I am so incredibly grateful to be taking forward steps. I hope you are doing well at the moment.

  6. I’m also a lot better than when the wheels came off 2 years ago which was a very scary time. It’s great to reflect and remind yourself what you’ve achieved. Well done Donna!

    • Thank you so much Jayne. It’s great to hear that you have made a lot of forward progress with your health too 🙂

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