Chronic fatigue syndrome

[serenityvee]

Hi there,

My name is Vee and my little boy has just turned 1 this weekend.

I am looking for other mums with chronic illness who have babies to talk with about the strains and struggles of living day in day out with sickness.

I have CFS moderately and can walk for 20 mins max, only have to use a wheel chair occasionally like this weekend when we took our little boy to the zoo. On a good week I can manage to take him to a signing/sensory class and a church toddler group and then church on Sunday. A bad week we are housebound pretty much other than absolute have to appts.

My symptoms are: migraine, jaw, neck, shoulder, back and leg pain, ibs, breathlessness, fatigue and flu like symptoms, noise and light sensitive, sore throat, nausea, constipation, anxiety, depression, low self esteem.

What I find hardest is the vicious way I talk to myself about my parenting. I constantly criticise myself in my head for not communicating with my boy enough or using the right words for him to understand because I have so little energy. I talk to him all the time and am in my element being a mum and everyone tells me what a great mum I am but i don't think so most days. Today is a god day and I do feel like a god enough mum today but these days are rare days.

Does anyone else struggle with anxiety and low self esteem with chronic illness?

I find prayer and worship to be the only things that aliveate the distress.

Blessings,

Vee

[sweetpeasmommy]

That sounds so hard, but it sounds like you are doing a lovely job with your babe. He doesn't need an athletic mama, he just needs his mama. Please don't be hard on yourself, chronic illness can do a number on your mental health from what I've seen.

I don't have chronic illness or a baby but I'm hoping someone who has been there will see this.


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[RiverRock]

I think you are doing a great job of taking advantage of your stronger days. I have an autoimmune disease but I don't have a baby and my symptoms are now manageable through medicine. I can relate a little bit because I remember being very sick at the time of diagnosis. It is especially hard to live by an old definition of normal when your body won't cooperate. I'm sorry that you struggle with your health.

[Earthmummy07]

I am so sorry I never got round to replying to your pm, but I'm coming back when I have time to sit at the computer I rpromise

[Chaos Coordinator]

Have you tried an elimination diet? I am mostly asymptomatic now....but the food is complex and I'm the only one who actually understands it im here if you ever want to discuss that. I also usually have a fancy supplement dance going on. But alas, it's worth it for me to be able to accomplish basic life things like finishing a load of laundry or taking my kids on a walk. I love being able to accomplish the basics. It's like its validating for me....I can be an adult. Look at me washing dishes. (Nevermind I could never work full time or anything like that.)

[ThreeKids]

This runs strong in my family. Have you heard of Spoon Theory? It's a way of explaining to people that you only get so much energy a day (12 spoons) and each thing you do costs you spoons (so many for showering, so many for going to the store) and when you're out, you're done.

[serenityvee]

Hi sweetpeas mummy, what a lovely name. Your words rang in my ears as I was getting ready this morning 'My boy doesn't need an energetic mummy he just needs his mummy' which is what I have been trying to tell myself and believe so thank you. Yes I only heard recently that chronic pain alone can make you depressed, I wish someone had told me that 3 and a half years ago when the ME hit me.

River rock, thank you for your words, an autoimmune disease sounds horrible, praise God it is treatable. I think I have only just accepted after 5 years that I have ME. I've carried on trying to be like everybody else when I'm not and that realisation alone is going to help me I believe. It's a one day at a time process and my mantra that God gave me is "Kindness leads to freedom and healing", kindness for myself and my family and friends. (I am incredibly hard on myself and that leads me to be judgemental of others, something I am asking God to remove from me)

EarthMummy, no worries I know how hard it is to find time to myself let alone anything else. I'll look forward to hearing from you when you can.

Chaos Coordinator, I have been on the fodmap diet for 3 years which works quite well if I stick to it, it's about eating alkaline foods and avoiding the ones that are hard to digest or cause bloating etc. It's also gluten and dairy free. My problem is I love sugar (sugar addict) which is not good for ME. I try to stick to fructose but even that is not good in large quantities. I try only to have a dessert twice a week but I often have a chocolate ovaltine before bed.

I love your attitude that you celebrate the small things in life. How long have you had CFS? I'd definitely be interested in hearing more about your diet if it's helping your symptoms and thanks so much for sharing a bit of your journey with me.

ThreeKids, I have yes, a dear friend of mine told me about it and it was very wise indeed. I've just started writing an activity list again each day to monitor how many activities I do (and getting in the shower is an activity that exhausts me). I forgot that it was 12 spoons though and once you've used them you are done. That is food for thought thank you!

I'm so glad to have found GCM, it is an answer to prayer and God is so faithful, he really does love me so much doesn't he.....

---------- Post added at 09:37 PM ---------- Previous post was at 09:32 PM ----------

River rock- I love your quote at the bottom of your posts, that is so me trying to figure out and ask God for all the wisdom ahead of time to get it perfect with my boy and not mess him up. You made me smile lots thank you x

Sweetpeas mommy, I'd love to know what breaking the chains is? I had a word at a conference this summer saying that when I worship the chains on me break off one by one because worship is so powerful. I also love the song Break every chain, do you know it?

[DolphinMemae]

I am no longer a mom of a babe, but I have suffered from chronic illness for many years (including while I was having littles) and have had to overcome horrible self-talk that perpetually undermined my healing living.
Have you ever heard of or read, Search For Significance by Robert McGee?
you can get the book and a journal specifically for the book. I highly recommend both. http://www.barnesandnoble.com/s/the-...r-significance

I also recommend you invest in 3X5 cards and write Scripture verses that speak to you and your life (start with Psalm 139 if you need a place to begin; or 2 Corinthians 12:9 "But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." ) Keep those cards with you at all times and read them when you get up, when you are waiting in a doctor office, before you go to sleep at night. I also put the affirmation and some of the charted information that was in Search For Significance, too.

I know attention can be an issue when you are struggling with chronic illness or depression - it can be very hard to even read a book. If this applies to you, highlight what speaks to your heart and at times when you are low just reread what you highlighted. Soak it in like a dry sponge. It will help to change the negative messages you sometimes speak to yourself.

Don't expect too much from yourself. On hard days take babysteps. If you can anticipate when a hard time is coming, set only one or two goals for the day and tell yourself you did good when you just did (or made progress towards) just those one or two things. Goals can be very simple and/or "easy" when necessary - like make one phone call to a friend, make one appointment, read one page or one Bible affirmation. When it's done you have had a successful day, even if it was a hard day.

I hope you find these suggestions helpful.

[Chaos Coordinator]

Ovaltine is not gluten free

[Aerynne]

I have migraines and anxiety. It makes it very hard. My hardest thing when I do have a migraine is that usually I can force myself to get up and do something that absolutely needs doing, but it's hard for me to do it with any love or patience when I am in terrible pain. And I get angry more easily and am very grumpy and I hate being that way but pain has a way of taking over everything.

Sometimes I think kids benefit from it, though. I am such a type A mom that if I felt well all the time I would probably hover over them too much, help them too much, etc. This way there are times that dd1 has to cook lunch and I don't care how much of a mess she makes as long as kids get fed (and yes, it helps when they get older and can fend for themselves and each other to some degree). But while I hate those down times when I am in so much pain, I do feel like it can be good for my kids' independence.

[sweetpeasmommy]

Breaking the chains is a membership by approval forum. You will start to see some of these when you get more posts.

I'm familiar with FODMAPS and glad it has helped you.

[RiverRock]

Originally Posted by serenityvee

River rock, thank you for your words, an autoimmune disease sounds horrible, praise God it is treatable.

[/COLOR]River rock- I love your quote at the bottom of your posts, that is so me trying to figure out and ask God for all the wisdom ahead of time to get it perfect with my boy and not mess him up. You made me smile lots thank you x

I looked up the Wiki definition of CFS, and my symptoms, at their worse, read like the list of symptoms for CFS. Have you had your thyroid checked? I have thyroid disease that is about 95% manageable through medication and attention to lifestyle choices like minimizing stress and watching my diet (some people do best on a strict diet, I can get away without being strict). My other goals are to aim for a bit of regular exercise (increasing over time) and daily sunshine.

Thank you for your comments about my sig line. You read through the lines that I sometimes struggle with knowing how to parent my 15yo.

[Redeemed]

Vee:

My mother in law was incorrectly dx with CFS in 1989 for 10 years. What they called CFS back then, they now call non differentiated connective tissue disease not otherwise specified. She was diagnosed with SLE (lupus) in 1997 after having her ANA tested. Have you had any other autoimmune disorders ruled out? DH has early onset lupus which was caused by genetics, but set off by the anthrax vaccine series he was given before deploying to Iraq in 2007.

[RiverRock]

My friend was dx'ed with fibromyalgia and 15 years later discovered she had low thyroid function. Rheumatoid Arthritis could be another disease to be tested for. I don't know much about this, but post part depression could be another option if symptoms came after the birth of your ds.

[ThreeKids]

Originally Posted by Redeemed

Vee:

My mother in law was incorrectly dx with CFS in 1989 for 10 years. What they called CFS back then, they now call non differentiated connective tissue disease not otherwise specified. She was diagnosed with SLE (lupus) in 1997 after having her ANA tested.

Wow, that's a long time to go untreated. My sister had mixed connective tissue disease, which includes lupus. She was able to mostly work her desk job with intensive treatment and supernatural grit.

I don't know that any dx of CFS isn't incorrect. It would be a "haven't figure it out yet" dx.