So, as I was awake last night vomiting again, I came to a conclusion.
I don’t do pregnancy well. Sure the payoff at the end is OH so worth it (bring on my baby!) but the journey? Not so fun.
And I blame a good portion of my pregnancy woes, not on pregnancy, but on my CFS and how it relates to my pregnancy.
I found out the other day that I’m not immune to Rubella (German Measles. Very dangerous for the baby if I catch it during pregnancy). This set alarm bells ringing in my head, because at last count I had been immunised for rubella 3 times. Once as a toddler, once when I was 12 and then for a final time at 16 – less than 4 years ago.
I knew my immune system was pretty bad, but I hadn’t realised that it was actually non-existent. Makes me wonder that there is something that all the blood tests that have been run (admittedly, prior to being pregnant) have missed.
Surely a disappearing immunity to a disease I was immunised against should raise questions markers for my doctor?
But the thing is, I don’t look sick. I might look tired sometimes, but generally, unless you know me quite well, I don’t look sick. I don’t talk about it outside of immediate family (Mum, Nan and Nathan) much.
When I was barely 13, my hip started to hurt. I couldn’t walk and I felt a little off. Tired and headachey and sick. Xrays showed nothing, blood tests showed nothing conclusive and yet, I was still sick. I couldn’t walk (6 weeks on crutches) and I couldn’t go to school.
My headaches continued, as did the tiredness, even after my hip was better enough to walk on. Funny though, after my hip got better, it was a steady stream of other joints/muscles putting up complaints.
I was so sick and exhausted, that I couldn’t brush my own hair. I needed help getting out of bed and I had NO hope of washing my own hair. I just couldn’t keep my arms above my head long enough to get anything done.
I was nauseous alot of the time and couldn’t eat much without wanting to vomit. I lived on pasta and salad for months. Doctors told Mum that I was ‘faking it’ and ‘anorexic’ because they couldn’t find anything else wrong. God knows I wasn’t either of those things.
It was the most frustrating 2 years of my life, trying to get a diagnosis and treatment.
After nothing was found in my bloods (except one slightly raised infection counter that is STILL raised, but not high enough for them to consider) and nothing was found on a CT, they diagnosed me with CFS, told me to exercise lightly and regularly, watch my diet and go home and cope.
That was almost 7 years ago.
I have been at home, coping, with no better diagnosis than CFS, for 7 years.
I still have days where I can’t eat. I still have the muscle aches and the joint pain and the overwhelming tiredness. Most of the time I can ignore it, but pregnancy aggravates all my symptoms terribly.
It’s silly, little things like stirring soup? Make my arms ache and I have to sit down. I can’t chop vegetables without resting. I can’t stand for long periods of time and I walk a very fine line between eating enough so that I don’t feel sick due to an empty stomach and not eating so much that my body revolts and I lose it all again. I don’t heal very fast or very well.
It’s hard, not that I am sick, because hell, I have been dealing with it for *this* long, I know that I am not going to lose my ability to cope, but because to other people, if I don’t look sick, it isn’t really happening.
That is the problem with auto-immune diseases (yes, CFS is considered an auto-immune disease. It is also only supposed to last 2-5 years before you recover), you don’t look sick. It’s even harder because even if you are visibly sick, it is an invisible illness.
The medical profession is very good at fixing obvious problems. A chest infection; an earache; a broken leg; but if your disease is hidden, you get thrown in the ‘too hard’ basket and left to cope.
The medical roundabout of trying to get a diagnosis is dizzying and frustrating, because of not looking sick.
To other people, I don’t look sick. Hell, sometimes I have a hard time convincing Nathan that I am having a bad day. My headaches don’t go away and something is generally aching at any given moment. But I don’t look sick.
And sometimes, I don’t know whether that is a curse or a blessing.
Oh girl, I feel your pain. So sorry. I know from professional experience (in my pre-kid life I was the Physical Therapy Director at a Chronic Pain Center) that what you are dealing with is big and bad. Hang in there…all those hormones don’t help you feel better. Sending hugs.
texasholly @ June Cleaver Nirvanas last blog post..Apples?
That is pure evilness to be chasing a child, carrying a child, and try to keep up. I don’t know how you manage.
witchypoos last blog post..Pajama Party
I know how you feel I am always in pain and the last two times I went to the doctor she said it was probably nothing. Its so irritating that I just suck it up and live with the pain.
Megans last blog post..Life
That’s a good question…blessing or curse. Frustrating either way, though.
I don’t do pregnancy well, either. The pregnancy is actually the only thing keeping me from having another baby. I HATE pregnancy.
Mr Ladys last blog post..At Least I Can Admit When I’m Wrong
I don’t have CFS, but I do have RSI and other aches from various muscle sprains that have never really gotten better, you learn to live and work with the constant not quite right feeling and the tiredness. So I know a little about how you feel.
That’s too true, you do get left in the “too hard” basket. That stinks! And unfortunately with chronic problems you never know if you’re going to feel better one day to the next and it’s hard to make plans.
Mrs. Cs last blog post..The Mad Scientist Look.
sorry to hear hun..
thinking of you..
lots of internet hugs and chocolates for you..
Tazs last blog post..48 Weeks Old
I do understand,
every word.
The rubella thing seems odd.
Small Man didn’t have his grade 6 booster shots – he was too sick. I just get the biggest NO alarm bells when it comes to this lot of immunisations – I have no idea why, but it’s strong.
You poor little bugger.
I know how it feels to just want to get on with a normal life, like everyone else – and it just isn’t happening (physically).
I have no idea with what the ‘go’ is for pregnancy these days, it seems to change every five mins!
BUT Small Man highly recommends ‘rock star’ energy drink to you, about the only thing that’s worked for him – at all.
Certainly not an every day option (cost+the risk of ‘overdoing’ it). But good in an emergency – maybe for later, after bub is born?
Take care,
G
xx
mysts last blog post..And then…
Maybe we need to start another drive on the Internet – this time to get you a proper diagnosis and rememdy for whatever it is that you’re dealing with. I’m no doctor, but it just smacks to me of something deeper than ‘CFS’. We need to help you find out what it is and fix it – once and for all.
lceels last blog post..100 Word Challenge – Yearning
{{hugs}} I know how you feel sweetie. It’s the autoimmune disorder hell –
Rees last blog post..Me(me) Again?
Oh hugs for you. I have a chronic pain condition, also exacerbated by pregnancy and I can very much relate. You’re right about bubs being worth it though. One thing, in my various internet travels I have come across a number of women who keep testing not immune to rubella, despite numerous boosters between pregnancy. Immunity can “wear off” which is why “they” like to test at each pregnancy. From what I understand from these women, for some people, that particular immunisation just doesn’t take or something. So you’re not alone in that and it may or may not be related to your CFS.
I dont do pregnancy well either and I dont have CFS. ((hugs))
Suzies last blog post..Bad Mommy Strikes Again
I can’t imagine how frustrating that must be, to have an “invisible” illness that affect your life so profoundly, and it sounds like that might not even be the correct diagnosis. The symptoms you describe also sound a lot like fibromyalgia. I hope tomorrow is a better day.
Sending warm, energizing, and happy thoughts in your direction!!
Sounds rough to me and I think looking well is probably a curse. For one thing there’s nothing worse than feeling crap and having people telling you that you look good.
I’d have no idea how to start a petition, particularly in your part of the world (as per lceel’s comments) but if anyone starts one I’m signing up.
Hugs and a warm (or cold depending on your preference) flannel for your forehead.
Barbaras last blog post..266/366 – Mother’s Little Helper
Hello, lovely!
Did you ever go to a chiropractor when your hip was first hurting? Have you been to one since? I had similar symptoms in my early 20’s, and that’s what started my love affair with chiropractic and natural doctors – the MD’s don’t generally know what the fuck they are doing, in my opinion and experience. Its a lot of trial and error. A chiropractor, a few liver and colon cleanses, dietary changes, and getting rid of the candida I was full of, and I was completely well. I know you don’t have much access to the natural health world out there… I wish you did. Sending hugs your way.
KATs last blog post..Miraculous Sleep
Oh sweety, I wish I could just be there to help give you a rest sometimes. Maybe one day, eh? xxx
Wow, I feel like I WROTE this post! Granted, for me it’s not CFS, it’s diabetes, but so, so similar. The inability to stir the soup? That’s totally me. That’s why I feel like another child is out of reach for me for a few more years–even though I want one NOW–because I am So. Freaking.Exhausted. from this disease.
I am so so sad that you have to live with this. I feel your pain.
Oh, and speaking of that, you do know about Chronic Babe, right? (http://www.chronicbabe.com/) It makes me feel so much better to know that I’m not alone in my suffering, even though I wish no one had to deal with this kind of disease. So, thanks for sharing! And I’ll be sending you good thoughts for strength and healing~
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There are lots of things like that. Nobody would know unless you told them and you dont want to feel like a whinger.
I have IBS, if I eat the ‘wrong’ thing at the ‘wrong’ time I get cramps and feel as though I have a bad case of food poisoning. It keeps me up at night in the loo and sometimes in tears to a friend at 3 in the morning. No cause and no cure apparently. Its hard to explain to people why I cant eat anything creamy because it sets it off. When I was a child I was also ‘faking it’.
Sometimes you feel sorry for yourself because nobody else will. Well done for coping so well, especially while pregnant. It does sound very hard to live with and I hope you feel a little better just by talking about it. xx
P.S My mum said congrats on your pregnancy and finding out it was a boy. Shes very excited.
*was a boy. I mean IS a boy. Duh.
Yes. Yes. Yes and yes. Autoimmune disorders are hell. I was given the shrug and told over and over to “try to control the pain” as best I could. My husband forgets that I may be in pain. I struggled with depression FROM all the symptoms of it. It took years to find the solution for me: acupuncture and supplements. I feel your pain. Pregnancy certainly does not help…but the payoff is SO worth it.
Hyphen Mamas last blog post..Who Are You… And What Did You Do With Hyphen?
It sounds exhausting, the whole thing sounds as though you could do with someone listening to you and doing something to help, rather than place you in the too hard basket.
Hugs. Its all i have right now but you are welcome to all of them.
tiffs last blog post..A few facts.
I think maybe another round of testing is called for – after this baby is born of course. Fibromyalgia sounds a possible to me as does MS. I reckon an unconfirmable CFS diagnosis lasting this many years is pretty damn unacceptable. In the meantime you’ll just have to take each day as it comes and do the best you can, which I’m sure is what you are doing.
Due to surgeries for 2 breast cancers I too have problems raising my arms for any length of time so, if DH isn’t around to peg out the washing, I usually just arrange it on a clothes-horse on the verandah. The other option is to take the little step-set out and stand on that. Worth a try?
Wow. That is awful. I SUCK at pregnancy, but have no auto-immune disorder. I can only imagine the exhuastion and pain must be incredibly debilitating.
(((((( hug ))))))))
Fes last blog post..Sometimes my lot in life…
Sending lots of good, healing thoughts your way. You’re almost there, hang in there Veronica! I wish I could help!
*gentle hugs*
Jenn FLs last blog post..One More Day
Oh, dear Veronica, I am so sorry.
While it is not the same, the HT has affected me in such a way that I have a better understanding of what you mean than if I didn’t have it. They can’t actually treat the HT (the antibodies attacking my thyroid and making me feel miserable) but they can treat a damaged thyroid. Oh, wait, one that is damaged ENOUGH. After diagnosis (FINALLY) years ago, the doctor basically said, “When it’s really, really bad, we can help you. Right now it’s not bad ENOUGH, so there’s nothing we can do for you. But we need to keep doing regular tests and scans. Bye.”
It’s also an auto-immune disorder – a large part of my “immunity army” is too busy beating the shit out of my thyroid to work on ACTUAL invaders. *sigh*
I’ll bet you are ready for that baby to come out so that yu can at least eat more reliably… though sleep is what you really need, too, eh? Gahhhhhhh.
<3you
Sarcastic Moms last blog post..If you want to punch me in the face, here’s your chance.
Hugs, yeah blessing or curse ???
I find when I am feeling at my worst, I get the most compliments that I look good !!!!
Widdle Shamrocks last blog post..Life is a caberet old son
Have you been tested for celiac disease (and / or tried a gluten free diet)? Your symptoms sound awfully like mine pre-diagnosis, but they wouldn’t ever have diagnosed me if my mother hadn’t been diagnosed first.
http://www.amazon.com/gp/reader/006076693X/ref=sib_dp_ptu#reader-link (search for chronic fatigue)
I can only imagine the frustration you must feel by looking one way yet feeling another. You are incredibly strong, though. No doubt . . .
And you are so right, pregnancy is really not all that fun. I was so miserable the last couple of months (hobbit feet, out-of-whack back, pounding headaches) I finally understood while mothers screamed “Get this thing out of me” before they lovingly cradled their babe in their arms . . .
Take care, you . . .
LaskiGals last blog post..The Mantra of the Fearless
Hope that everything will be better soon
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Veronica, Your mom is so sweet. I read her blog about you today, and it really struck a cord with me. I left a comment over there, but will copy it here for you. Please let me know if I can help with any research or information. I didn’t start REALLY feeling better until I took matters out of the doctor’s hands and put them into my own and started learning everything I could about my symptoms. I was blessed enough to have an old friend of my husband’s recognize some of my symptoms and put me on the right path. Here is the comment I left with your mom:
Oh wow! I have such similar symptoms!! It took me YEARS of my symptoms getting worse, doctors just shoving bags of drugs at me and/or telling me or at least looking at me like I was making it all up, it was all in my head, I was just depressed, or shrugging their shoulders with nothing to tell me except “well, keep a health diary and let’s go from there”. After years of ups and downs and very hard pregnancies… finally, last year at age 31 (I’m 32 now), I started to find some answers. On my own, with the advice of a friend and with my own research and trial and error treatments.
I highly suggest that Veronica research the following things – and tell her doctor to test her for them (doctors don’t like to test for these things, because it’s not a simple blood test, and/or they aren’t familiar enough with them)…
1. gluten intolerance/celiac disease (for the headaches and stomach problems!!! I can totally avoid migraines and usually avoid other types of headaches for the first time in my teenage/adult life!)
2. fibromyalgia and chronic myofascial pain (fibromyalgia can mimic CFS, but it’s not the same thing, and from all her joint and pain issues – I am guessing she has the above two things – not CFS).
Please, please, please – ask me any questions if you guys decide to start researching any of these things – I have learned so much in the past almost-year, and would love to pass on the information to someone who could use it. I also, along with a gluten intolerance, have a chemical sensitivity, so have gone fairly ‘green’ which has helped many symptoms as well. If you need links to symptoms and how to diagnose any of the above mentioned items, let me know and I’ll send those along as well.
I’ll copy this comment onto Veronica’s blog as well. I HOPE this info can help you – I WISH someone had told me about these things years ago – I could have avoided so much pain and fatigue. I was finally getting to where I had energy, was feeling good, and was on a regular and actual difficult exercise regimen when I found out I was pregnant again. The pregnancy has exacerbated my symptoms so I can’t fight the diseases I have as well, but I do know enough that this pregnancy isn’t as bad as my last one. 🙂
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