What Do You Do When Chronic Illness Stops You In Your Tracks? https://reclaiminghope.blog

What Do You Do When Chronic Illness Stops You In Your Tracks?

 

Do you ever feel that you take two steps forward and three steps back? I have to confess, it’s been one of those weeks for me. It started out great, but quickly went downhill, and I’m not sure why.

As I wrote about last Saturday, my hubby and I went out for a little treat at Cinn City, and though I’m tempted to blame my issues on that (because of the gluten), I don’t really think it’s the culprit. I’ve eaten gluten on many occasions without the reaction I had this week.

This may fall under the TMI category, but one of my co-morbid conditions with my fibromyalgia is IBS. On Tuesday, I started having pain in my lower abdomen and Tuesday night, I was awake almost all night due to the pain. When I woke up Wednesday morning, I was absolutely miserable.

The pain in my abdomen was equalled only by the pain in my head, as the medication I take for my IBS gives me a terrible headache. I had all these great plans for the week, but none of them were going to happen. I had basically been stopped in my tracks.

When we live with chronic illness, these things happen much more often than we’d like.

It’s easy to become discouraged. I don’t know about you, but I start to feel as if I can never really make progress because I have so many starts and stops. It’s annoying!

Here’s what I’ve learned though — even though I may not feel I’m making progress, as long as I’m putting one foot in front of the other I’m moving forward.

I’ve learned to just ride out these interruptions and then get back to my normal self-care plan once they’re over. Although this two steps forward, three steps back life isn’t always easy, it can still be a fabulous life.

Here are a few things that have helped me ride out these interruptions:

  • Keep things in perspective. It’s easy to head down that rabbit trail of “what if I never feel any better?” but the truth is, this current situation is only a small segment of time. It helps to realize that there will be times in our lives when we feel better and times when we’ll feel worse. The good news is, we’ve made it through all our worst days so far. Knowing that gives us the confidence that we can handle this too.
  • Allow yourself to “just be.” This is a hard one for me. As most of you have probably figured out, my natural personality is Type-A, and I always feel I “should” be doing something. The longer I live with Fibromyalgia and its associated conditions the more I learn it’s okay to just do nothing sometimes, because in doing nothing I’m actually doing something — allowing my body to recuperate.
  • Do whatever you need to do to feel better now. If that means lying in bed all day, we have to give ourselves permissions to do so and not feel guilty about it. We already have to deal with enough with this illness; we don’t need to take on guilt for something we can do nothing about.
  • Once the ‘crisis’ period has passed, start to take small steps back to normal activities. In this case, I’m having to transition from my mostly liquid diet back to normal food, but I can’t just start eating the things I normally eat or I’ll end up right back where this started. It’s a gradual process of slowly adding foods, one at a time, until I can resume my regular diet. In my post Back On The Path To Self Care, I talked about how to get back to our regular self-care activities once we’ve had an interruption like this.
  • Take stock of potential causes of the setbackIf we can figure out triggers that set off flares, we have a better chance of preventing them in the future. I always try to retrace my steps, or in this case, what I ate, in order to identify anything that may have set it off, and if I figure it out, I mentally file it away so I can avoid that particular thing the next time. Sometimes, though, it’s hard to find a definite correlation, and that’s okay too.

Do you ever have those times when your illness just stops you in your tracks? How do you deal with them? Please share!

Blessings,

~Terri

 

 

 

 

28 comments

  1. Do you process high fructose corn syrup? I don’t well, aka fructose malabsorption, and I’m allergic to wheat (but usually not anaphylaxis level.) I’m assuming Cinn City is like a Cinnabon, which for me would be a double whammy as it would be high fructose corn syrup plus a ton of wheat. I’m not saying I’d never eat it. But, EDS comes with IBS, too, and, well I know what I’m in for when I eat high fructose corn syrupy wheat things.

    1. It’s hard to say…. I hardly ever eat anything with HFCS in it, so I’m really not sure. You make a good point about there being a good chance of it being in the cinnamon roll. I’m not sure if it was that, because my symptoms didn’t start until Tuesday. I think I most often have these terrible issues when I’ve eaten more (or a different kind of) fiber than I’m used to. I do know I won’t be making a trip back to Cinn City for a while just in case…. I’m going to try to take it really easy on my gut over this next week or so and hopefully, get back to normal. Thanks for the heads-up on the HFCS; I’m going to start paying attention to that and honey. Hope you have a wonderful weekend!

  2. P.S. – fructmal isn’t just about the artificialness of the HFC. It’s about the ratio of excess fructose or sucrose to glucose. So, sadly, “natural” honey is just as bad for me (or maybe more accurately stated ‘me and anyone unlucky enough to use the bathroom after me.)

  3. I’m sorry you’ve had a rough week. I think chronic illness is a constant back and forth and it can get exhausting keeping up with it, especially the unpredictability. I’m also sorry you have IBS. I had bowel issues for years, which was put under the ‘IBS’ category, though I don’t think that was necessarily correct. I had pain and bloating and all sorts of yuck and it’s miserable. Sometimes we just have to ‘go with the flow’ and ride it out as best we can without being too hard on ourselves. We do the best we can, and sometimes we do get stopped in our tracks. I agree with the feelings over not making progress, too. It’s hard to be okay with the situation when it feels so frustrating, but maybe we need to redefine progress; as you say, putting one foot in front of the other is still moving forward. Another fantastic post, Terri. I do hope next week is kinder to you  ♥
    Caz xxxx

    1. Thank you so much sweet Caz! The pain has settled down some so I’m feeling hopeful this little episode is just about behind me. I’ll just be careful what I eat for a while.😊 I have absolutely come to a new definition of progress since I became ill. I had to in order to deal with the ups and downs. Progress can mean different things to different people. I think we just have to decide what progress looks like for each of us. Hope you have a wonderful, relaxing weekend!

  4. You always have the answers I am looking for! These are great, ‘how to get through a flare without blaming yourself’. Sorry, you were ‘hit’ with a painful flare. They just ARE part of fibro. Feel better. I need to share this with the group! xo

    1. Awww Kim, you’re too kind! I’m just muddling through like everyone else, figuring out what works and what doesn’t. Thanks for sharing – I appreciate it! Hope your weather has warmed up some today. Hugs!

      1. That’s just an amazing temperature jump! I can’t imagine what you guys have been going through with that awful cold. I’m not surprised your body’s screaming – I think the pressure systems affect our pain levels. I know it affects my migraines, so I imagine it messes with the rest of our bodies too. I hope things settle down for you soon.

  5. Sounds like you are doing the right thing by simplifying your diet – I switch to liquids too. We just do what is tried and true and pace ourselves again. It can be frustrating, but it’s all we’ve got. Take care.

    1. You’re so right V.J. – when things go wrong, we just have to fall back on what we know works. I hope you’re doing better today. Sending hugs!

  6. Really great post. It captures much of what I experience and I’m sure many other Fibro Foggies do, as well. Sometimes I get excited and carried away when I’m feeling good. The motivation, lack of fatigue, pain or various asundries of symptoms are missing. So I find it really demoralizing to have a great day or two and then be “laid up” for days thereafter. I think all your points and recommendations of what to do while you’re in the thick of it are dead on. Just allowing ourselves time to be down, without guilt, is still doing *something*…..we’re resting, healing and recovering. It’s easy to lose sight of this and just feel lazy. I think coming to peace with the down days is an ongoing battle for all of us type A’s….there’s always so much that could be done, it’s hard to just lie. Great post and all great pints. Thanks so much!!

    1. Thank you so much Stacey! You’re so right about it being an ongoing battle to make peace with the down days. I do find I have an easier time with it now than I used to, probably because I’m realizing that I’m actually doing something to help my body by not doing anything. Of course, my MacBook helps a lot with that, because I can always just plop it on my lap and at least read some great blogs.😊 Thanks so much for stopping by and for your kind words!

  7. Ah, so sorry that you suffered such pain. It can be so dispiriting. This is a great post though – good tips on how to be kind to yourself.

    1. Thank you so much for your kind words Jenny! You know, as people who live with chronic illness, we know there are going to be times when we’re in pain or can’t do anything. For me, the important thing is learning how to keep moving forward anyway. That’s what helps us remain hopeful in spite of less-than-desirable circumstances. Thanks so much for stopping by!

    1. Thank you so much! The pain does catch us unawares sometimes, and often those are the times that are hardest to deal with, but finding constructive ways to deal with is so important. Thanks for stopping by, and for your comment!

  8. Guilt is my biggest struggle! I’m so glad that you dove right into that one. It’s hard. We are getting prepared to move, and I feel horrible watching everyone work while I’m resting. My family is very understanding and supportive, so really it’s just my own projection of myself that’s the problem. As a mother, that’s the worst. Having to cancel plans (again) can be down right aggravating to everyone involved, but the guilt that follows is a difficult thing to work through.
    Thank you for sharing your life with us and all the wisdom you’ve learned along the way!

    1. Thanks for your comment Brandy! I’ve heard so many people say guilt is an almost-daily struggle, including me. It’s hard to get past that guilty feeling, and I’m sure it’s even harder when you still have children at home. I’m slowly learning that we can’t feel guilty for something we have no control over. I’m glad to know you have such a wonderful support system around you. All the best with your move!

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