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Chronic Pain and Fatigue – Managing your own Expectations

14 Nov 13
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image from Google Image Search “Dreams”

This post has been inspired by conversations with people I know and The Better Way CFS‘s post on “How CFS has Changed Me”. The conversations have been around other people expressing their concerns that my goals and expectations for the future are now unrealistic. The blog post talks about how being ill has caused a change in her goals are for the future.

I have resigned myself to the possibility I may not ever get well enough to work full time again, and I may have to change my career choices, but I am really struggling with letting go of, or changing, other goals and dreams because I see them as a defining part of who I am.

For example, my whole life I have wanted to be a mother. This, in my mind, is one of the most important things that could ever happen to me. I have always, even as a small child, pictured myself as a mother. I’m now being told, by multiple people in my life, that this life long dream is unrealistic. I understand that the people who are saying this are only saying it because they are concerned about me and my health, but it is still very hard to hear it. Their concerns are around my ability to look after a child while I’m fatigued and in pain and around the pain and fatigue that being pregnant can cause (especially given the Pelvic Congestion Syndrome). I am being told to consider the risks of going through a pregnancy and these people believe the risk is too high.

These are all valid concerns and I do understand where they’re coming from BUT I don’t think I’m going to give up on this dream. I believe that the risks are high but manageable and, in my mind, they are worth it. My mum is with me on this. She has pointed out that I have a large support base available to me in the form of family members and friends in the area that we live. She understands how important this is for me, and like me she believes that there is never a “right” time for having a child.

Before I got this ill, E and I had been discussing the possibility of “considering” children towards the end of next year. He now believes that until I am “well” (which lets be realistic, may never happen) I should not be considering children. Another point he made was that even if I get better he would be concerned about the pregnancy causing a relapse of symptoms. He has straight out told me that end of next year is completely unrealistic for considering children now that I am ill, and that I should be preparing myself for the unlikely possibility that I may never be able to have children.

These comments really hurt me. I know he’s only said them because he loves me and he is concerned about my health and well being and so I’m trying to take them on board and consider the possibilities but it’s difficult.

How have you dealt with letting go of (or redefining) something you believed was an integral part of how you perceived yourself?

Have you ever struggled with managing your expectations and dreams when they’ve clashed with reality or the expectations and dreams of those you love?

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  1. Alicia Butcher Ehrhardt November 14, 2013 at 1:26 pm

    It is tough. I had two sons before I came down with CFS 24 years ago, and my daughter while they were trying to figure out what exactly was going on. During the pregnancy with her, I actually felt a little more normal (not unusual), but it was very difficult – they’ve really never known me normal.

    I homeschooled them – I was home, have a PhD in Physics, and it was easier than dealing with school. The boys are out of college now, with good jobs; my daughter is a college senior.

    I wish I could tell you to wait until you are well, but I can’t – you are correct that it may be years before you are well.

    They do discover new things all the time – maybe you will be lucky.

    I see you stopped by my blog post about B1 – let me know if you ever try it, and if it helps – nothing yet helps everyone.

    Do what you’re doing: educate yourself. But plan for the possibility of having to change how you live more or less permanently – then if you get better, it will be a pleasant surprise.

    Best of luck.

    • Megan S November 14, 2013 at 1:31 pm

      Thanks Alicia,
      I think E is struggling as much, if not more than, I am with the changes that this will mean for us )at least in the short term. You’re right about needing to accept where I am and having a nice surprise if I get better.
      I’m finding the community here and on twitter are really supportive and helping me accept where I am and the uncertainty of the future.

  2. Celeste November 14, 2013 at 3:20 pm

    I think I’m going to do a response post to yours. There are many things that you’ve made me think about.

    BUT! I wanted to tell you that you shouldn’t give up. I was pregnant in June and July, and my fibro symptoms actually almost went away. It’s said that pregnancy actually gives temporary release from fibro symptoms. Okay, maybe not for everyone, but it certainly did for me.
    Please don’t give up on being a mother. It will be worth it.

    • Megan S November 14, 2013 at 3:30 pm

      Thanks Celeste, I definitely haven’t given up but I know E and if he doesn’t think we’re secure enough and thinks that I won’t cope he won’t agree to anything.

  3. Claire November 14, 2013 at 7:55 pm

    This is my greatest fear.
    I don’t want to give up on my dreams, but I’m also a realist. It’s a hard position to be in, but with the right planning and support, anything is possible.

    • Megan S November 14, 2013 at 8:00 pm

      That’s my thought. I’m hoping we’ll be able to find a way even if I don’t get “well” again.

  4. thebetterwaycfs November 14, 2013 at 8:36 pm

    It’s definitely a balance and takes a lot of deep digging to re-define your goals and values. When I was quite ill, I had really wanted to travel the following year. I asked my therapist what I should do? Should I be planning for the trip, or re-aligning my plan? She asked if I felt like I could travel at the time, and I say maybe a little bit, and she asked if I thought I could in a year, and I said I had no idea. She then told me to plan for the future you want, and adjust it along the way. There is no point in stressing out about what I can do in a year or two, worrying about it will probably make it less likely to happen! I suppose really all you can do is plan for the present moment, and hopefully seeing what works and what doesn’t in the present, will help you define what you can do in the future.

    I definitely went through some stages of grief when adapting my life to this illness haha, but I think I came out stronger in the end!

    • Megan S November 15, 2013 at 8:14 am

      Thank you. The advice from your therapist is really good. I’ll try to keep that in mind as I move through this process. I am trying really hard not to stress over things I can’t control.

  5. dawnhosking November 14, 2013 at 8:54 pm

    It is extremely tough and challenging to say the least, I fought hard initially, that is how I always approached illness in the past — work it off. Now it is different, a ball game that has a set of rules all to itself — I had to adapt, accept and adjust (still am, it’s hard to avoid the fight nature within me). I trained hard to be a nurse and had that career cruelly taken from me, I felt it was so unfair and was so disappointed, not to mention financial loss. I have had to accept that I cannot return to that profession. I am fortunate that I already had my gorgeous daughter before becoming unwell, I can understand how upset you must feel about choices that you must make.

    • Megan S November 15, 2013 at 8:12 am

      Thank you for understanding. I also fought hard, attempting to keep working and exercising until work asked me not to come back until I have medical clearance. In some ways I still fight it when there is something I really want to do but I’m trying to stop doing that.

      • dawnhosking November 15, 2013 at 9:25 pm

        It is challenging, that’s for sure.

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  9. sian wootton January 18, 2014 at 6:22 am

    Hi Meg
    It’s so hard to try and keep a sense of identity when somewhat of what formerly defined you work etc is taken away.
    I have had a few people tell me to get pregnant as it can help ME. And there is some evidence that the hormones during pregnancy can improve symptoms for a third of patients. But I am not in a relationship or financial position to consider it.
    Don’t give up on this dream though, so many people are still able to become mothets despite illness. It will just take much more planning and finding a great medical team that understand pregnancy and ME. Some woman have c sections because of the stress of the birth. So it is possible and so long as you have help with child care too.
    It sounds like E has your best interests at heart. I’m sure he just doesn’t want to see you suffer anymore than you are. We often forget about the effect seeing us like this have on our closest relatives. But if it’s something you both want then involve him in all the research and planning to reassure him.
    I will send you a tweet to a blog post I wrote about this.
    Keep strong you’re coping with it all really well and I’m enjoying reading through your blog.


    • Megan S January 18, 2014 at 8:25 am

      Thanks Sian, appreciate you’re thoughtful comments and the post was great! I’m not sure E feels ready yet, but he knows it’s important to me so we’ll be discussing it again at the end of this year.

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