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My Wonderful Son Has Pots.


willows
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Today I received a letter from the hospital about Mikes TTT at first I didnt take it all in but basically my wonderful hardworking , never hurt anyone in his life , caring , honest , do anything for anyone ............love of my life , has what I have . :( and I'm devastated.

I haven't said anything to him yet as last night ( 5th November ) he went out with one of his best friends and watched the fireworks in our village coming home just after 9 pm looking pale with dark lines under his eyes and I didnt have the heart to tell him when he obviously wasn't feeling very well .

He's due to go to college tomorrow for 3 hours studying criminology and sports rules , but I think given the circumstances I'll give him the morning off and we can have a mum & son day , which he loves as I tend to do all things he likes to do like looking at motor bikes, clothing and stuff to go on bikes , you know all the sort of boy things lads of this age do.

He needs a winters coat and a new helmet as his nice bright shiny new one which I bought him just 2 months ago is fine for the good weather but he's finding that now its cold his nose and lips are going scarlet and he's in agony with them , so a full face helmet is needed , and the big blue one I bought him can be used for summer time riding.

So tomorrow I have the awful task of telling my son he's got what I have , I feel so guilty and I cannot believe that out of my three children that the one who has it is the one who just doesn't deserve it .............yes I know what your all thinking , how can she say that any of her children deserve an illness such as ours .

Well if you'd have ever meet my eldest or my middle daughters in person and spent anytime with them you would understand why I say Mike is the only one who should never get it .

Both my daughters have treated me appallingly since they where old enough to ask for money ( 11-12 years old ) one hitting me and one verbally abusing me because she couldnt get her own way , which is why I dont have anything to do with either of them at this time . Mike has been a witness to all this and in his time tried to stop my middle daughter from hitting me , but it got so bad that we had to do the 'tough love 'on her and she is now banned from any form of contact with my husband , Mike or myself until I feel she has mended her ways and shows us all some respect.

So think of me tomorrow at around 12:30 am as I'm going to take Mike for his favourite meal of all times a Chinese at the wet wok in Plymouth which is right by the waters edge .

Hopefully he will take it well , as well as anyone can take something as devastating as being told one day you could end up like mum .

Ami .

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Oh Ami, how awful. I can only begin to imagine the feelings that you must be experiencing right now. If it is of any comfort please aknowledge that your own situation is at the severe end of the spectrum of POTS symptoms - many members here function very well despite having POTS. There is no certainty that Mike's illness will follow the same course as yours. Hope is a stong medicine and you both need to hope that things will improve and that Mike will get good medical care. I know that reading something in black&white is shocking but I suspect deep down that you already knew most of what the letter said.

Wishing both of you the best mother/son shopping trip and the opportunity to discuss things together openly.

Flop

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Ditto everything Flop has said. My thoughts will be with you both tomorrow. My son was DXed first. He helped me figure out what had been wrong with me most of my life. My Mom, gramdma, brothers, and son are all affected. These things tend to be familial so you are certainly not alone. Mike is very lucky to have you as an advocate and role model. Keep in mind, you've got a smart fellow there. He already suspects he has something like you do. Just be matter of fact in your delivery and he'll take it in stride- hopefully! Let us know how it goes.

Julie

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Thank you all for your support ,I never thought I'd ever have to tell one of my own children this awful news , but in all he was the one who was strong out of us two.

I sat in the car and asked Mike where he would like to go to first as we had decided that he needed a bit more than just a coat and a new helmet , rather a lot more in fact :blink:

I think from my face he knew something was up and as we pulled away from home he turned and asked me:

'what is it ? ..........has one of your tests come back ? .......is Mark getting worse ?..................or is it something else?'

I couldnt actually face him to tell him but kept driving for a minute then pulled up and just said ' your TTT test came back yesterday ..............silence'

'And ' he asked.

I watched him from the mirror as I told him that it was positive and that at one point his blood pressure bottomed out at 22mmHg with a registered heart beat of 37 which is why the consultant flipped slightly at the time'.

Watching his face I could see how brave he was trying to be , but his eyes welled up and he looked at me and just said

' well thanks world , like mother , like son , hey mum'

He then just took a huge deep breath and said ' well , I think you knew all the while that I had it and if I'm honest I think I knew as well , but just hoped you where wrong and I was just imagining the pain , headaches and all the other rubbish I'm having '

And that was it ...............he just started talking about shopping and getting sorted for the winter months so that I wouldnt get worried about him getting cold or wet ! :o I cannot believe how he took what I told him in such an adult manner .

We then did some mega shopping and I have to admit I did buy him tons of stuff which he needs for college in the winter months ahead , including a mega hooded waterproof extra thick /long sort of designer Parker but without the fur and in a really good quality dark grey/ black /light grey check pattern ( I'll have to take a photo of it so you can see ) a full visor bike helmet , 4 pairs of black trousers, 2 hooded jumpers ( very heavy weight fabric) a pair of black leather ankle boots and a pair of brown /cream/black designer trainers , which I think made his day because everything in the store he picked up and said he liked I bought for him , which is something I dont normally do but I'd put some money away for christmas and decided to use a bit of this , I think Mike needed to feel that even though he was different from his mates he could still look the same even though he has to wrap up and keep warm and dry .

We also picked up one of his best friends a lad called Jake , I explained to him that Mike was positive and he was so upset , as was his friend I spoke to on the phone earlier this morning , both of these lads spend so much time at my home its almost like I have three sons instead of one and sometimes forget they aren't mine when buying stuff!!!!!! which of course they dont mind at all and keep calling me 'Mims' :lol:

So after shopping all three of us went to the wet wok and Mike started to speak about how he felt about being like me , he said that at least he now knew and unlike myself didnt have to suffer years f being made a fool of by doctors or being called a lunatic and that when he see's his consultant in a couple of weeks time that knowing what he does now means he wont be shocked with what else he has to say .

I think that the bond we have between us as mother and son is so much stronger now , he is out of all three of my children just so like me in so many ways , a real tough guy but with a heart of gold that he's not afraid to show and if it is possible I'm even more prouder of my son than ever .

I suppose the only dark cloud hanging over me is my daughters , as we do not have contact I now wonder if they to are suffering the pain and humiliation of having the condition but not getting anyone to listen to you or believe what you are saying and it does make me sad to think of them both .

It has been at least 10 years since I spoke to 'A' my eldest and 5 years with 'E ' my middle one , and yes I've tried so many ways to 'mend' what has gone between us even thought it has been both Mike and I who have suffered at there hands and not the other way around , but with no joy.

Even there own father doesn't understand why 'A' my eldest is behaving like she is towards me and quite honestly I dont think she knows either and I now think its all down to that so much time has passed with me saying ' I'm sorry for anything I've done to her, her husband and her children ' ( which I was told to do by a counsellor in problems such a this within families ) even my ex husband doesn't actually believe there's anything for me to be sorry to her for .

What we now think is that she is now so embarrassed by what she has done to Mike and I and by the fact I am saying sorry for her actions , she just cannot contact me because she now knows it is she who is in the wrong ...........if that makes sense to you . :blink:

And as for 'E' my middle daughter the one who physically and verbally abused me in and outside the home ( and in public ) , I'm afraid mother hood hasn't calmed or mellowed her at all and she is still somewhat unruly in her ways , which grieves me know end . I thought that when she had her own child she would understand how a mother feels towards her children and just how much it hurts to be abused by the people you never thought would hurt you , but it appears not .

So as for my daughters I fear that I will never know if as yet they to are showing signs or have POTS along with Mike , and as my husband has said often enough , I'm not to worry about them , they didnt want to be part of this families life and have the love , care and kindness that I show to my children , family and friends , it was they who changed , not me .

At least today's over and Mikes OK and we can now take stock and look to the next hurdle which is the consultants appointment in three weeks time .

Bye for now Ami xxxxxxxxxxxxxxxxx

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Ami,

I'm so sorry to hear this news of your son. Thanks for sharing this part of your life with us. Wow, I can't imagine what it was like telling him yourself!

Take care,

Lisa

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Does this prove that POTS is genetic or do you have something that causes POTS that is also genetic, like Familial Dysautonomia? I'm just curious. I'd hate to pass this on to my children if I have any. Edit: I read that you have Autonomic Nerve Dysfunction, is that genetic? I guess I can go look it up. How unfortunate =(

I'm so sorry this has happened =( I hope there is a cure someday or I hope that you find what is specifically causing this in you and your son if you haven't already. I hope it isn't permanent. And if it is, at least he has you, who has experience with it. He's lucky to have you =/

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Thanks for your replies.

When I was first seem by Professor Roger Bannister way way back at the National Hospital in the 1970's he felt that although he couldnt put a name to what I had that the chances of it be inherited was NIL.

Then when I was diagnosed properly ( first time after many , many years of misdiagnosis and none -diagnosis) I was told that Autonomic Nerve Dysfunction was Not inherited . Later I was told that I could possibly give it to my daughters but not my son ....................and now they are saying that it is inherited by all ;)

So what I'm going to say to Mikes consultant is would it be possible to do a full gene's test to find the bad one thats lurking in us and then to somehow screen this for Mike so that it will die out with his kids and not be passed on to anymore of the family .

Mikes even suggested that if this isn't possible at the time when he wants kids that his wife and he may need to have test tube babies in order to sort this problem out at very early stages of fetus grown in order to eradicate the rotten gene .............my son has definitely got his head screwed on the right way , which is why he's going into forensics as a profession .

In all he's taken it quite well and has said even if he has to suffer like I am at least we have found out now its been passed on and he's not married had kids and found out in his twenties or thirties that he has it and his kids have it as well , he doesn't think he could stand it knowing that he'd given such a terrible condition to his own kids and thinks that one way or another between us the condition will stop here and now with us two .

So level headedness takes over and we will win this one .

Ami & Mike .....................xxxxxxxxx

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:lol: Mikes not at all well at the minute , we had to take him to the doctors on Tuesday as he looked terrible and the doctor has given him 2 weeks of college with no college work allowed at all in this time , he's to rest when and as he wants to and if feeling up to it we can take him out to take off his mind of things ........... :o

why your probably asking ????

Well read this , I was utterly horrified and so angry with one of his mates after I found out .

Mike is in his second year at college having completed his first getting the highest award in his year a merit/distinction.

This year he has been teamed up with an old school friend and another lad on the course so that when the bigger course projects can be split between three , making it a lot easier for the students .............well that was the idea , in practice it was different for Mike .

Yes............the other two have done not one word at all in the last two joint assignments .

It took me three hours of gentle persuasion to get the whole sad affair out of mike as he didnt want to get his 'so called mates' into trouble !

Apparently when the first assignment was handed out Mike started his 1/3 right away , about 4 days before the three of them where due to do the presentation , the first lad claimed he had lost his work on his computer and his mate said he had forgot to do his ................so Mike not wanting to fail sat down and finshed off all 3 sections in just 3 nights , on the day of the presentation he got the other two lads just 15minutes before they had to do the big talk in front of the whole class to read what he had written for them and they all got a 'merit pass 'for the brilliant work ............No re-word that for Mikes brilliant work.

Once they discovered that Mike was such hard working student well that was it and they haven't lifted a finger to write a word since , leaving all the work to Mike to do or fail the piece of course work that had to be done.

Not only this but they have been hounding him constantly about finishing the work via email and text and of course with the amount of work he's been doing and the pressure that he's been under as well as his pots playing up ............he just broke down .

I went mad when I got on the phone to this mate , excuse after excuse he tried on me , saying Mike agreed to it all :) which was such a lie becuase this lad actually told me he had done all his work and was just waiting for mikes 1/3 .

Then he tried the ' didnt understand the course ' then 'my mum and dad would be so angry ' if I fail the course, then how he'd lost the work sheet ...............yep I've had every excuse in the book for cheating .............yes, its cheating to sign a college work sheet with your name on when the work was done by another and you can be thrown out of college for it .

But What really set my mind to going into the college and spilling the beans on both lads later that day asking for all the 'merit passes' that Mike has done for them both knocked of thier college progress reports and having them both redo the work on thier own was this : :huh:

This so called good friend of Mikes , who was here from Friday night until Monday evening eating me out of house and home , was on the Internet , X-box . telephone to mates and smoking all the time Mike was working his guts out trying to finish the paperwork for Wednesday presentation !!!!!!

And even worse: when I spoke to his mum to explain what had happened , his mum told me she was not very happy because her son was falling behind in his college work because he has had to look after Mike so much and so has not complete his own single work sheets :lol:

Oh , dear was she mad with her son when I told her that Mike .............hasn't been ill at college ( I dont send him of he's at all unwell , yet he's still up to date with all college work ) and that the one time he was very unwell the head of the course took Mike out and stayed with him until we arrived and at no point has her son been asked to 'look after mike '

Apparently this lad has been getting on the bus for college ..........yet having arrived in Plymouth has not going into college but wandering around Plymouth all day from 8 am until 6 pm going home telling his parents that Mikes been ill and he's had to look after him so he's been unable to do written work !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :lol::lol::lol::lol:

Well, its as I always say , you get found out in the end and these two lads are no friends of Mike if they feel that they can do such a thing to a lad who's so unwell , struggling with pain and dizziness 75 % of the time and then outright lie about him ..............friends like this are not needed .

Mike and I are going to have a mum and son cooking day today (probable ending up flicking jam or flour at each other) making all sorts of nice christmas things in the process( as well as redecorating the kitchen with pastry scrapes, jam hand prints and flour foot prints all over the house :P:) ) I think I'd brush myself down with melted butter , roll in flour and stick hundreds and thousands all over myself if that was what it takes to make mike smile again :P

Hopefully a couple of weeks doing all sorts of silly things like this will bring Mike back to his normal crazy self that he is and stop this awful feeling he has and the tearful session he seems to be stuck in at this time .

At least the head of the course is 100% behind me on this matter and he was quite worried about Mike being so down and unwell ( he's very tearful, down , pale , shaky and so tired ) but he is going to sort this 'piggy -backing ' or 'plagiarism ' out and stop any further things such as this .......dead. He's going to have the parents of both lads in to get this sorted out and all Mikes marks struck of the two other lads so called wonderful college record.

A very worried mum .........Ami xxxxxxxx

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Cant 'friends' just be the absolute pits.... as if he isnt putting up with enough... without those lousy a***holes!!! I want to come down and sort them out myself!!!! and isnt it just awful being a mother and having to watch stuff like this unfold... its bad enough when people are well, but to take advantage when someone isnt well is beyond the bally limit.......grrrr Gwen

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