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Anyone else PG with a chronic illness (spoonies)

(15 Posts)
LadyMedea Fri 05-Apr-13 21:14:01

Hey there. I'm 5+2 on my first pregnancy and I suffer from CFS/ME. Had it since I was a kid (32 now). DH and I thought long and hard about whether or not to have children given the impact my illness is bound to have on our family life but we've decide to take the plunge. I am quite high functioning with the illness, pretty much working full time (or trying to) although I've just got over a big flare up.

The thing I find funny about pregnancy so far is that most of the symptoms are things I already deal with - tiredness, nausea, constipation, dizziness, etc. so for now I can't tell what's normal for me or what's new!

So are there any other knocked up spoonies out there?

Reenypip Sat 06-Apr-13 12:13:35

Hiya I'm 34w3d pregnant with my second. My little boy is nearly 2.
I have multiple health problems including ME.

LadyMedea Sat 06-Apr-13 18:28:43

Hi reeny. How have you found being pregnant? Did you fine MW and docs understood the situation?

SuffolkNWhat Sat 06-Apr-13 18:30:14

Message withdrawn at poster's request.

Reenypip Sat 06-Apr-13 19:45:29

Hiya both,
I'm the same really, it's hard to differentiate between symptoms and what health problem, or if pregnancy or if something new is going on.
I'm always trying to hide my pain, and other symptoms, it's become second nature to me, because I don't want to appear like I'm moaning to people, and I always try keep a smile on my face. So I don't think midwives or doctors know what it's actually like.
I know it my fault, but when most people with a chronic illness(es) you want yourself to believe your ok and be happy, it's only natural.
The only people who have seen the true me and seen on the outside how it affects me is my parents and partner.

Reenypip Sat 06-Apr-13 19:48:38

Did you see my other post about a tv production company looking for women who are pregnant with a health condition?

LadyMedea Sat 06-Apr-13 20:09:29

Nope, where is it?

massagegirl Sat 06-Apr-13 21:05:00

Hiya. In same boat here. I found first trimester a real struggle but actually same as cfs symptoms. I was mainly recovered from the ME before pregnancy so was quite hard dealing with the samr old symptoms back again. Now 32 weeks and pretty tired and some dizzy days but generally ok. Good luck. ME is not nice.

Reenypip Sat 06-Apr-13 21:16:16

The company say:
“We want the series to challenge misconceptions and celebrate triumphs and capabilities as well as reflecting the day to day realities and obstacles faced by each parent. It is really important we get the tone of the series right and speaking to people with expertise such as yourself would really benefit our series. We’ve had a really positive response from parents and parents-to-be with disabilities and are looking for people who are expecting over the summer/autumn who would be interested in taking part in the series.”

If this applies to you, or you know of someone who might be interested in taking part, please contact Dominique Belcourt on 020 7424 7701 (dominique.belcourt@twentytwenty.tv). They are apparently working to a rather tight deadline, so do get in touch as soon as possible if you would like to be considered.
Twenty Twenty Productions’ website is at www.twentytwenty.tv Facebook and Twitter links are www.facebook.com/PregnancyAndParentingDocumentarySeries & www.twitter.com/PregnancySeries

rachywhite83 Tue 16-Apr-13 17:53:02

Im 30 and I have had CFS/ME since I was 4. I'm currently 36 weeks pregnant. I have been so well while being pregnant. Now I'm getting nearer to the end im getting more tired but in general I have felt better.

My midwife and consultants have been so good with me. I have decided to have an epidural in order to conserve energy while in labour. I have also told them that a c-section would be a final resort because of the recovery time.

I have always found this to be such an isolating condition but it's good to see that other people are coping and going through the same things

LadyMedea Tue 16-Apr-13 21:22:09

Hi rachy well done or making it though. I'm really hoping ill get an improvement for at least part of the pregnancy.... Need to keep working!

Catsycat Tue 16-Apr-13 21:55:59

I have CFS/ME. Looking back, I believe I have had this from age 14, but was not finally diagnosed until between having DD2 and DD3, around age 38! I am lucky to be generally pretty well, though with periods where it flares up and wipes me out. I think this is why it took so long to get a diagnosis - quite often by the time I got referred to a specialist, it would have settled down again. When I first had a flare up, it was still a condition people laughed at and many didn't believe was real(!).

When pg, I found it difficult to tell what were pg symptoms and what was CFS, as others have mentioned, they are similar. After the 1st trimester, generally I felt better when pg.

DD3 is 10 months, DD1 has started school this year, and if I'm honest, I feel I'm starting to struggle a bit the last couple of months. By the end of the week, I often feel quite unwell and I have had to spend a few weekends largely in bed, which I know is not great. I have found the symptoms more constant since having children, because life is so much more tiring anyway and you can't often rest when you want to, have reliably uninterrupted sleep, get away from the children to exercise etc. I have got a 5 yo, 3 yo and 10 mo, DH works away some of the week, and we have no family to help out locally, so it is pretty full on. That was my choice, so I can't complain (well, I do sometimes!). I need to make some changes (building up exercise, eating properly) because I'm not taking the care I should, but it is really difficult to juggle everything I need to do each week! Most people don't know I have CFS, just a couple of close friends, the HV and childminder, DH and my parents.

The mws and doctors never mentioned it when I was pg, though it was in my notes, and was partly why I was given a private room in hospital. All three of my DDs were delivered by CS (2 x EMCS and 1 x ELCS) and the recovery was not too bad. I delegated everything except feeding the baby and my own personal hygiene for the first few days! Do ask for a private room in hospital if you think it would help and you have to stay in, as I found it easier to rest than on a ward due to less coming and going by staff, patients and visitors.

I'm glad I made the choices I have, and I wish everyone well in their pgs, and with their babies when they arrive. Sorry for crashing the thread, as I'm not pg wink.

BabyHMummy Tue 16-Apr-13 22:31:14

Hiya. I am 22 + 2 with dd1 and have chronic asthma as well as an anxiety disorder and depression. My asthma is virtually non existent which considering this time last year i was in hospital and having 10-15 silent attacks a day is a miracle. Even my consultant is amazed.

The anxiety and depression however is in overdrive. This pg is unplanned which doesn't help but although had to be signed off work i am just about doing ok on day to day stuff. am not sure how much of my anxiety symptoms (insomnia, ocd, nesting) are pg related but my best advice would be try not to worry. I have found the more i focus on what is related to what the more i stress and the worse i feel iykwim xx

Nesca Mon 22-Apr-13 21:58:57

I have ME/CFS and fibromaylgia. I have been struggling with it and I have 2 beautiful children, but can't get the idea of a 3rd out of my head and at 35, my biggest worry regretting not having another. I was diagnosed after my children. Anyhow this is how I found this thread. I have been taking something call L tysoine which is an amino acid which feeds the neutrtansmitter in your brain. You can get them from ://www.amazon.co.uk/Now-Foods-L-Tyrosine-500-Capsules/dp/B0013OUPSE/ref=sr_1_1?s=drugstore&ie=UTF8&qid=1366663327&sr=1-1&keywords=l+tyrosine

Basically they are responsible for controlling everything your body does from sleeping, breathing....everything. After reading a bit about it on ehow, they think that in ME the neurotransmitters gets a bit of balance causing problems. See link chronicfatigue.about.com/od/treatingfmscfs/a/neurotranshub.htm

I have been taking them and I feel so much better. I'm not sure if they would be ok in pregnancy but they are great. I'm not cured, but they give me a boost and my bad days only last a few days rather than a couple of weeks. I would recomend them. I have looked into other amino acids ect.... Which I am going to try to help sleep, relax ect.... Hope this helps some people??

LadyMedea Tue 23-Apr-13 21:03:14

Crikey I'm absolutely crackered today. Had to leave work at 2pm as I was falling asleep at my desk. This isn't going to go down well at work as I was just back to full time. Please let this be a pregnancy symptom that will ease in a couple of weeks. 8 weeks today, first MW appointment next week.

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