not well mum

[Feather]

Is there anyone else on here looking after an ASD child, and they are not well themselves. I am Mum to an ASD teenager, and was diagnosed with an under active thyroid last year, and have to take medication for it. Just wondered if there are any other Mums with the same condition and how do they cope? I had to give up work, as I couldn't cope with sorting out statementing, diagnosis, fighting school for everything, etc. I have never given up fighting for him, and my husband is very supportive. It has just been the last thing I needed, not having alot of energy some days.

[KezT]

My OH has a variety of ailments, most debilitiating being his psoriasis (skin condition causing major flaking, itchiness & bleeding of approx 90% of his skin, and regular hospitalisation for infections & tempreture problems) and pssoriatic arthritis (the same condition affecting the joints rather than the skin, causing arthritis & loss of movement in all his joints, including his spine).

 

He was going through assessment for retirement from work on health grounds at pretty much the same tiem as DS was going through DX for ASD. It was a tough time;)

 

OH has been retired from work for a couple of years. we are still trying various drug regimes to try to manage his conditions, and his health is up & down.

 

I work (although only part time what with caring for him & AS son & other kids!), so he is the main parent at home. Although much of the caring for DS falls to me when OH is ill, obviously.

 

On the whole, we manage by working together and supporting each other. And because we have to;) It only becomes really difficult when he is in hospital, or if I am ill too!

[BusyLizzie100]

Is there anyone else on here looking after an ASD child, and they are not well themselves. I am Mum to an ASD teenager, and was diagnosed with an under active thyroid last year, and have to take medication for it. Just wondered if there are any other Mums with the same condition and how do they cope? I had to give up work, as I couldn't cope with sorting out statementing, diagnosis, fighting school for everything, etc. I have never given up fighting for him, and my husband is very supportive. It has just been the last thing I needed, not having alot of energy some days.

 

I've had an underactive thyroid for years, about 20 now I think. I presume you take thyroxine? I take tablets daily and have yearly blood tests to check that all is in balance. During pregnancy I was tested very regularly and adjustments made to the dosage. I was scanned more frequently, too. And now, if I have an ailment, the first thing that's tested is my thyroid levels.

 

If your dosage is right and your thyroid is balanced, you shouldn't feel tired or any of the other symptoms of an underactive thyroid. That said, caring for children and especially ASD children can be exhausting and deplete your energy levels... It may be worth seeing your GP and getting your levels checked, just in case your dosage needs tweaking. Sometimes just a little nudge up or down can make a difference.

 

Apart from that, fighting the system to get what's right for your child can also be extremely debilitating and stress-inducing. Sometimes it can feel like the whole world is against us! Take strength from the fact that you are doing your best for your child and being a good mum, and try not to beat yourself up about not feeling like superwoman every day. Remember to grab yourself a little 'me' time!

 

Lizzie x <'>

[julie1]

i haent been to good for a while, recurring chest pains, it has taken me 3 months to get to the doctors who said i need a chest xray. Now i need to find the time to go to hospital and do it. I deciced to wait a couple of days and go with my oldest daughter who has an ENT appointment. The poor girl was quite unhappy that i needed a chest xray and thought i was dying from cancer like the tv advert said. I did manage to convince her its most likely an infection and nothing to worry about. i now wish i picked another day but when?...

[jaffacakes]

I had an Endoscopy booked for last winter to see if I had Coeliac Disease, but I was really ill with cold after cold and chest / throat infections and various other issues that after the 4th Endoscopy was cancelled because I was on antibiotics I gave up and cancelled the referral.

 

I've not had time to go back and ask for another referral. I also have a few other issues but don't have the strength to go back and argue with the GP.

 

Currently surviving on Iron tablets as I am constantly Anaemic, Calcium and Vit D as otherwise I don't sleep and the occasional serration inhibitor which gives me a few days good sleep and seems to perk me up when I completely run out of energy. I'm using Dermol and occasionally hydrocortizone as my skin is dry to the point of bleeding in places too.

 

Such is life.

[Feather]

Thanks all for making me feel a bit better. We are so busy looking after our ASD children and the rest of the family, fighting the school system, professionals, etc, that we don't have time to look after ourselves. This was why it was such a shock to be not well. I do take thyroxine, and improve every day. You just tune in and know your limits. It makes me feel better that there are other Mums like me, and husbands too that are not well. I just don't see why we have to continuosly use up our energy fighting for things for our ASD children. My child is leaving school shortly, and we can't wait.

[Tally]

I've heard that is can take a while to get hypothyroidism under control and get the right balance of medication. I hope that you will soon be feeling well.

[Kathryn]

Sorry to hear this. Try and look after yourself.

 

<'>

 

K x

[Annea]

Hi Feather,

I totally understand how you feel.

 

I have PBC/AIH overlap syndrome, which is basically two autoimmune disease of my liver.

My conditions are progressive and not curable, and I ahve been ill inexcess of 10 yrs now.

 

I no longer work, havent for about 4 years as I have constant pain and somedays struggle to get out of bed.

 

Like A/S My condition is hidden and I look relatively well most of the time so people just don't understand and I'm sure think I am a lazy ######.

 

Fighting the system with my 15 yr old DD with A/S really took it's toll on my health and I often cried with despair. I am now trying to get to the bottom of the problem with my 13yr old DD who has some problems. This time round I have noticed I have a lot less energry and drive, and have to moderate my activity.

 

Like all illness you have to look after yourself or you are no good to your children. I'm hopeful that once the doseage of medication is right for you, you will begin to pick up and feel better. As others have said some ME TIME is the key and if you can get this in any way, do take it, even if it means asking for some help from a family member or something.

 

Hope you feel better soon.

 

 

[sadie]

Not made any posts for a long time partly due to illness. Yes I've got hypertension, stage 4 kidney impairment and to top it all I had a blood clot in my lung. Medical appointments seem to take up most of my time but luckily my DD has now reached a stage where she can actually help me! I too have always looked well, at least when I have the energy to face the world....but I think that my family get the worst of it :

 

Do you think we carers have a much higher incidence of ill health?

[KezT]

Do you think we carers have a much higher incidence of ill health?

 

Statistically, carers have a massively higher incidence of ill health, and some conditions are almost "carer specific"

 

Oh well, life sucks..... better than NOT caring for your kids/OH.