Don't do it!!!!!!!!!!
Recently I went to the pub with some colleagues as a fare well gathering for a colleague. It was a hot sunny day and I did not drink to excess. 3-4 glasses of wine, a plate of chips and over a few hours.
I blacked out.
One minute we were talking about what we all thought, as children, what we would do as adults. This was about 5pm. I do not remember anything after that. The next thing I knew it was 9am in the morning.
Frightening.
This has only happened to me once before in my life, 12 years before. The circumstances were the same, a few drinks with friends in the sun. So MCAD people I can only assume that the heat is not good for us. Alcohol we should not have anyway but there we go!
It was probably the most frightening experience of my life. When I woke up, there were glucose tubes on the bed side where my husband had rubbed it into my gums to get my sugars up - how selfish of me to have done this to him. BUT how was I to know I would take such a dramatic turn.
At approximately 2pm the following day I started to vomit, and did so like clock work for the next 6 hours.
Was I pushing myself too hard at work and home? - yes but I find it difficult to turn off.
Should I have been drinking? - No, but as this had not happened to me since I was 17, I did not think.
Is it because of my kidneys? - Probably. I learnt a year ago that they do not work properly and probably never did but again in my naivety, I did not think anything of it.
What did I learn - Yes I may hurt myself temporarily (a few days - hopefully) but ultimately it was those who I love that I hurt. In my foolish way I did not think of them, what they must go through when my sugars drop.
I may almost be 30 but living with MCAD is difficult. All my life professionals have wanted to keep me in a bubble and been surprised I made it to 5. Obviously I thought I could take on anything as I had already beaten the odds. As I a wanting to start my on family has this lesson really hit home. I am not invincible, I have to be careful if I wish to continue defying the odds.
Look after yourself MCAD'ers. Our life is precious and we are lucky to get this far. Lets keep going!
Tuesday 21 July 2015
Wednesday 10 June 2015
Sorry it's been a while....
WOW!
I cannot believe that I started this blog with so few hits and now by freak accident found people have been messaging me. FYI - Replied to you all.
I am now more determined than ever to keep this going particularly as I enter a stage of my life scary to the norm......
I want to have a baby......well I am 30 in 5 months!
So since my last posts I found an amazing consultant in London, right next door to Great Ormond Street where I was diagnosed. He has given me a new lease of life and comfort in what I am (and plan) to do. Any UK readers I can give you his details if you are looking for a good doctor.
I have bought my own house and got married less than 2 weeks ago We MCAD peeps do not deal well with stress so just imagine all that in a year! Thanks to my wonderful Warren everything went well.
At one point this year I did feel I was on the cusp of going to hospital but the education I had given my now husband prevented that.
I was away on my friends Hen do and did not feel well. I had been drinking so most assumed it was that. It was norovirus. My friend (who was pregnant - poor thing) had to drive me home whist I continued to vomit in the back of her car. When I returned home my husband too thought this was the result of alcohol. This was only because of his lack of experience when I was extremely ill. I told him this was not the case and to call mum. He did and she was there in 10 minutes. One look and she saw the MCAD rearing its ugly head. Rather than take over she explained to my husband it was illness, what to do and call if I get worse.
She knew what she was doing. By this stage was vomiting (on cue) every 15 minutes, I could not support my head and my speech was slurred this continued for 16 hours (the worst I remember).
As soon as I could stomach anything my husband fed me a teaspoon of plain ice-cream every 30 minutes to get the sugar I so desperately needed back into me.
What did I learn from this - A lot of people (when you are young) see the side effects of MCAD a lot like people who are drunk. Always have someone with you or who you can contact that you trust. Others will ignore the signs and this is where us MCAD'ers stp into dangerous territory. Keep safe and trust your instincts.
I cannot believe that I started this blog with so few hits and now by freak accident found people have been messaging me. FYI - Replied to you all.
I am now more determined than ever to keep this going particularly as I enter a stage of my life scary to the norm......
I want to have a baby......well I am 30 in 5 months!
So since my last posts I found an amazing consultant in London, right next door to Great Ormond Street where I was diagnosed. He has given me a new lease of life and comfort in what I am (and plan) to do. Any UK readers I can give you his details if you are looking for a good doctor.
I have bought my own house and got married less than 2 weeks ago We MCAD peeps do not deal well with stress so just imagine all that in a year! Thanks to my wonderful Warren everything went well.
At one point this year I did feel I was on the cusp of going to hospital but the education I had given my now husband prevented that.
I was away on my friends Hen do and did not feel well. I had been drinking so most assumed it was that. It was norovirus. My friend (who was pregnant - poor thing) had to drive me home whist I continued to vomit in the back of her car. When I returned home my husband too thought this was the result of alcohol. This was only because of his lack of experience when I was extremely ill. I told him this was not the case and to call mum. He did and she was there in 10 minutes. One look and she saw the MCAD rearing its ugly head. Rather than take over she explained to my husband it was illness, what to do and call if I get worse.
She knew what she was doing. By this stage was vomiting (on cue) every 15 minutes, I could not support my head and my speech was slurred this continued for 16 hours (the worst I remember).
As soon as I could stomach anything my husband fed me a teaspoon of plain ice-cream every 30 minutes to get the sugar I so desperately needed back into me.
What did I learn from this - A lot of people (when you are young) see the side effects of MCAD a lot like people who are drunk. Always have someone with you or who you can contact that you trust. Others will ignore the signs and this is where us MCAD'ers stp into dangerous territory. Keep safe and trust your instincts.
Wednesday 3 July 2013
MCAD and Alcohol
We all enjoy a drink whether a glass of wine with dinner or a social occasion. If you have MCAD be careful.
Alcohol has many effects on the human body. You can have your highs and you can have your lows. The most important thing about alcohol and MCAD is the effect that is has on your blood glucose.
Alcohol typically lowers your blood glucose level. This is why bar snacks and kebab vans profit from our intoxication. People with MCAD can not afford to let their blood glucose dip and therefore you have two options with regards to alcohol. You can avoid it or you can be sensible. The same as everyone else really.
I was told before starting University that I should never consume alcohol. This lasted less then 24 hours after I enrolled. You can not tell an 18 yr old what to do.
I have has some fantastic nights out with friends and some that I would rather forget all as a result of alcohol and how I managed it. On those nights which were fun, I always ate a carbohydrate filled dinner first, mixed drinks with high sugar drinks, took snacks with me and ate before going to bed. No problem.
The times in which I wish I could forget. I did not eat and as a result am a failure of my own principles.
I would never tell someone with MCAD they could not enjoy a drink but I would advise knowing your own body and limitations before you do. After 10 years of legally be able to drink, I have learnt these boundaries but still trip up on occasion and rather then paying the price of a hang over the next day, I pay the price of a hang over the next week. I know my body is unable to cope with the effects of alcohol like most others and that I will be and always be a 'light weight'. Not such a bad thing as it is a cheaper night out but if you push it the consequences are higher.
Years ago, on holiday, 'someone' decided to spike my drink with extra alcohol (not the first time either). I knew that being away from home I had to be mindful of myself. Obviously I had not planned for this. I was quickly rushed by ambulance to hospital and treated by people who not only did not recognise MCAD but spoke almost no English. I had declared that I had MCAD and provided full details when booking my holiday and paying for health insurance however after the incident the insurance company declared that I was not covered. This was not my fault and said party responsible had to pay up for the, not so funny joke.
I now can not get health insurance when traveling abroad. All the result of one stupid action manifested by alcohol.
MCAD'ers' be cautious. You may be able to look after yourself but we live in a world or irresponsible and stupid people who do not know the consequence of their actions.
Alcohol has many effects on the human body. You can have your highs and you can have your lows. The most important thing about alcohol and MCAD is the effect that is has on your blood glucose.
Alcohol typically lowers your blood glucose level. This is why bar snacks and kebab vans profit from our intoxication. People with MCAD can not afford to let their blood glucose dip and therefore you have two options with regards to alcohol. You can avoid it or you can be sensible. The same as everyone else really.
I was told before starting University that I should never consume alcohol. This lasted less then 24 hours after I enrolled. You can not tell an 18 yr old what to do.
I have has some fantastic nights out with friends and some that I would rather forget all as a result of alcohol and how I managed it. On those nights which were fun, I always ate a carbohydrate filled dinner first, mixed drinks with high sugar drinks, took snacks with me and ate before going to bed. No problem.
The times in which I wish I could forget. I did not eat and as a result am a failure of my own principles.
I would never tell someone with MCAD they could not enjoy a drink but I would advise knowing your own body and limitations before you do. After 10 years of legally be able to drink, I have learnt these boundaries but still trip up on occasion and rather then paying the price of a hang over the next day, I pay the price of a hang over the next week. I know my body is unable to cope with the effects of alcohol like most others and that I will be and always be a 'light weight'. Not such a bad thing as it is a cheaper night out but if you push it the consequences are higher.
Years ago, on holiday, 'someone' decided to spike my drink with extra alcohol (not the first time either). I knew that being away from home I had to be mindful of myself. Obviously I had not planned for this. I was quickly rushed by ambulance to hospital and treated by people who not only did not recognise MCAD but spoke almost no English. I had declared that I had MCAD and provided full details when booking my holiday and paying for health insurance however after the incident the insurance company declared that I was not covered. This was not my fault and said party responsible had to pay up for the, not so funny joke.
I now can not get health insurance when traveling abroad. All the result of one stupid action manifested by alcohol.
MCAD'ers' be cautious. You may be able to look after yourself but we live in a world or irresponsible and stupid people who do not know the consequence of their actions.
Monday 1 July 2013
MCAD and Pregnancy
Its four months until I turn 28. I am getting married in 2 years and saving for a deposit on my first house. So naturally my Fiancée and I have discussed our future and the possibility of having our own family.
We adopted a little Jack Russell 7 weeks ago called Flo, so that will do for the moment with regards to a family!
The prospect of having my own family and being pregnant is something I have thought about since I was about 13 years old when I first went to the Genetic Metabolic clinic and was told 'you can be our Guinea Pig when you have your first baby'. WHAT?!?! I had only just traded my Barbie dolls for a 'Backstreet Boys' poster! I was not old enough let alone mature enough to even consider that far into my future. I still could not spell MCAD (Medium-chain acyl-CoA dehydrogenase deficiency - I can now!).
I have always been fascinated by science and have always had a thirst for knowledge, this has probably only been increased to further understand my own genetics. I have always understand that two carrier parents have a 1 in 4 chance of having a child that would inherit the full condition (me) and 1 in 2 chance of having a child which, like them, would be a carrier (my younger sister).
So that's the basic principal.
My younger sister is a carrier of MCAD and when she was pregnant with her beautiful son, I explained the above principal to her. She consulted her Doctors, who then put her on to mine. With my blessing (and written permission) they were able to access all my medical files and have a number of tests to check the likely-hood of her son also inheriting the condition. All was fine and everyone is 100% healthy.
A little trickier for me perhaps. My Fiancée can also get tested to see if he is a carrier, which is great but it does not prevent anything from happening to me. Everyone else is interested in the inheritance part, my parents (who never gave up when others had told them too) and I are more concerned about my health. Will I be physically strong enough to cope with pregnancy and the stress of child birth? Would I have to have a caesarean? Am I wasting my time worrying because the probability of having children naturally is out of the question? I certainly do not know any of the answers.
Studies have shown there is a correlation between the age of the mother and problems during in pregnancy/labour and the higher increase of children born with physical/ mental disabilities. Does that mean by the time I am married and have my own house, probably 30, I will be too old and that I will further increase the chances of problems? If anyone has the answers please tell me!!!!
I would certainly need a very supportive and committed team of people around me and a lot longer recovery time. Is it worth jeopardising my own health and having to rely on other people to take time out of their lives to help? Or is it daft to even worry about these things when there are thousands of children in the world who need a family?
I could spend months philosophising on all of this but some information would be better. I have searched for 'MCAD and Pregnancy' on Internet search engines. The first link was about women undiagnosed with MCAD who have died during in pregnancy due to liver failure. Brilliant. Not what I was hoping to read. Apart from that, I found a lot of information pages for parents of children being tested or diagnosed with MCAD. What about me, what about the rest of us, if there are any more of us, I don't know if or where they are I have never been told nor found anyone. The rest of us want to know what comes next. What happens after infancy? Or Mr & Mrs Expert do you not know? Or if you do know please share it with the rest of us. I do not want to spend my life on countless trips back and forth to the hospital just to get answers or be told 'we will look into it and run some tests' only to be forgotten about.
MCAD and Pregnancy.......to be continued......when I know!
We adopted a little Jack Russell 7 weeks ago called Flo, so that will do for the moment with regards to a family!
 |
| Flo |
The prospect of having my own family and being pregnant is something I have thought about since I was about 13 years old when I first went to the Genetic Metabolic clinic and was told 'you can be our Guinea Pig when you have your first baby'. WHAT?!?! I had only just traded my Barbie dolls for a 'Backstreet Boys' poster! I was not old enough let alone mature enough to even consider that far into my future. I still could not spell MCAD (Medium-chain acyl-CoA dehydrogenase deficiency - I can now!).
I have always been fascinated by science and have always had a thirst for knowledge, this has probably only been increased to further understand my own genetics. I have always understand that two carrier parents have a 1 in 4 chance of having a child that would inherit the full condition (me) and 1 in 2 chance of having a child which, like them, would be a carrier (my younger sister).
So that's the basic principal.
My younger sister is a carrier of MCAD and when she was pregnant with her beautiful son, I explained the above principal to her. She consulted her Doctors, who then put her on to mine. With my blessing (and written permission) they were able to access all my medical files and have a number of tests to check the likely-hood of her son also inheriting the condition. All was fine and everyone is 100% healthy.
A little trickier for me perhaps. My Fiancée can also get tested to see if he is a carrier, which is great but it does not prevent anything from happening to me. Everyone else is interested in the inheritance part, my parents (who never gave up when others had told them too) and I are more concerned about my health. Will I be physically strong enough to cope with pregnancy and the stress of child birth? Would I have to have a caesarean? Am I wasting my time worrying because the probability of having children naturally is out of the question? I certainly do not know any of the answers.
Studies have shown there is a correlation between the age of the mother and problems during in pregnancy/labour and the higher increase of children born with physical/ mental disabilities. Does that mean by the time I am married and have my own house, probably 30, I will be too old and that I will further increase the chances of problems? If anyone has the answers please tell me!!!!
I would certainly need a very supportive and committed team of people around me and a lot longer recovery time. Is it worth jeopardising my own health and having to rely on other people to take time out of their lives to help? Or is it daft to even worry about these things when there are thousands of children in the world who need a family?
I could spend months philosophising on all of this but some information would be better. I have searched for 'MCAD and Pregnancy' on Internet search engines. The first link was about women undiagnosed with MCAD who have died during in pregnancy due to liver failure. Brilliant. Not what I was hoping to read. Apart from that, I found a lot of information pages for parents of children being tested or diagnosed with MCAD. What about me, what about the rest of us, if there are any more of us, I don't know if or where they are I have never been told nor found anyone. The rest of us want to know what comes next. What happens after infancy? Or Mr & Mrs Expert do you not know? Or if you do know please share it with the rest of us. I do not want to spend my life on countless trips back and forth to the hospital just to get answers or be told 'we will look into it and run some tests' only to be forgotten about.
MCAD and Pregnancy.......to be continued......when I know!
Sunday 30 June 2013
MCAD and Pushing Yourself
My aim was to submit a new post everyday however i have done the one thing that I have said you shouldn't. I have been pushing myself too hard.
I spent the majority of my Saturday lying in bed with the frequent dash to the bathroom. Vomiting when there is nothing left in your system is horrible and painful. Basically you a heaving the stomach acid. I am better today but my balance is completely off and getting dressed when your arms feel too heavy to lift is a mild challenge.
I spent most of the day passed out. Jumper and trousers on, under a quilt with a fan. My body was oblivious to the 21C outside. I did not realise that our Dog had spent most of the day lying on top of me and licking my face. She must have known as usually she would be in the garden checking her territory. Every time I wanted to say something It would not come out which made me frustrated. This wasted the energy I had and made speaking even more difficult. My fiancee forced me to sip lucozade and it took almost 2 hours to eat a doughnut. Not a problem I usually have.
So how did this happen? Simply, I pushed myself.
My day starts at 6am when I get up and walk the dog. I then get myself ready for work and am there by 7.30am to open the door for the staff starting at 8am. I will then work until 12pm when I drive home to let the dog out and give her some fuss. I then drive back to work and get there for about 12.27pm. My job is fairly demanding and I rarely go home within my contracted hours, or if I do, I will bring some work home with me. As soon as I am home the dog needs walking again and feeding, the tea needs to be made, and a bit of house work. I will then pop on my laptop, do a bit of work or go out for a walk to clear my mind. Get in the shower and before you know it its 9pm. I work the occasional saturday however there are weddings to be planned, birthday celebrations, parking to be sorted, grocery shopping, bills to pay and file, cleaning etc. I do not stop. I do not seem to have time to have a social life of my own.
Yes this may be completely typical for most people, that's life! But most people do not have MCAD, most people are able to produce the energy they need. Most people do not have to think about their physical and mental exertions. I over did. I am my own worst enemy when it comes to sitting down and stopping. There is always something that needs to be done. Life would be great if we were all wealthy enough to have a house keeper! It can be very frustrating when everyone else seems to be able to keep going all the time and I have to stop and rest. Sometimes it does make me feel like I am 87 not 27 but as I have said previously you have to play the cards that life dealt you. I do wish that I could pick another hand sometimes!
Note to self. Be less self destructive and learn to sit down!
I spent the majority of my Saturday lying in bed with the frequent dash to the bathroom. Vomiting when there is nothing left in your system is horrible and painful. Basically you a heaving the stomach acid. I am better today but my balance is completely off and getting dressed when your arms feel too heavy to lift is a mild challenge.
I spent most of the day passed out. Jumper and trousers on, under a quilt with a fan. My body was oblivious to the 21C outside. I did not realise that our Dog had spent most of the day lying on top of me and licking my face. She must have known as usually she would be in the garden checking her territory. Every time I wanted to say something It would not come out which made me frustrated. This wasted the energy I had and made speaking even more difficult. My fiancee forced me to sip lucozade and it took almost 2 hours to eat a doughnut. Not a problem I usually have.
So how did this happen? Simply, I pushed myself.
My day starts at 6am when I get up and walk the dog. I then get myself ready for work and am there by 7.30am to open the door for the staff starting at 8am. I will then work until 12pm when I drive home to let the dog out and give her some fuss. I then drive back to work and get there for about 12.27pm. My job is fairly demanding and I rarely go home within my contracted hours, or if I do, I will bring some work home with me. As soon as I am home the dog needs walking again and feeding, the tea needs to be made, and a bit of house work. I will then pop on my laptop, do a bit of work or go out for a walk to clear my mind. Get in the shower and before you know it its 9pm. I work the occasional saturday however there are weddings to be planned, birthday celebrations, parking to be sorted, grocery shopping, bills to pay and file, cleaning etc. I do not stop. I do not seem to have time to have a social life of my own.
Yes this may be completely typical for most people, that's life! But most people do not have MCAD, most people are able to produce the energy they need. Most people do not have to think about their physical and mental exertions. I over did. I am my own worst enemy when it comes to sitting down and stopping. There is always something that needs to be done. Life would be great if we were all wealthy enough to have a house keeper! It can be very frustrating when everyone else seems to be able to keep going all the time and I have to stop and rest. Sometimes it does make me feel like I am 87 not 27 but as I have said previously you have to play the cards that life dealt you. I do wish that I could pick another hand sometimes!
Note to self. Be less self destructive and learn to sit down!
Thursday 27 June 2013
MCAD and Food
The most important thing anyone with MCAD must do, or someone who knows a person with MCAD, is to make sure that you regularly eat. Due to our bodies inability to metabolise fats into energy we need a constant intake of fuel.
It is recommended that people with MCAD eat every 4 hours. I am terrible with this and always forget. I eat when I am hungry however I do always have sugary drinks throughout the day to keep the fire burning.
Complex carbohydrates are your friend. So think brown, wholemeal foods. Some people do not like brown bread, rice etc as they are used to the white varieties. You just need to retrain your brain. It is worth it. The complex carbohydrates take longer to break down giving your body a slower release of energy. This helps to stabilise the blood sugar until your next meal.
Always keep cereal bars, glucose tablets etc to hand.If you are out for the day make sure to take some supplies with you as you never know when you may get caught out and need something to keep you going. I have been caught out before and you start to panic.
With regards to eating every 4 hours, this is not possible unless you want to get up in the night. My dietician suggested I eat a sandwich before bed. With that amount of carbs I would never sleep! I always start the day with a pint of fresh fruit smoothie and a shot of Aloe Vera. The natural sugars in the fruit will give you the instant hit you need from fasting all night and the Aloe is great for your digestive system. Alongside this you can have some slow release carbs with that. Perhaps a bowl of porridge.
Avoid foods containing dairy products. Current research has found that they contain a particular fat (mono-triglycerides) that people with MCAD can not process. This then sits on the Liver and can make you feel quite ill. Over time the build up of fats can lead to Liver problems. This is different to being lactose intolerant, so check the label.
I love milk and cheese. The dairy free options are not great but considerably better than what they used to be. Soya milk is a great alternative and you can buy it with added calcium. If like me you do not like the taste of natural soya milk, try the flavoured varities. The chocolate flavour tastes the same as a regular milkshake. Dairy free cheese is not wonderful however the soft spread varities are pretty good. If you buy a flavoured variety such as sweet chilli or chive, you would not know it was dairy free. The hard cheeses have a rubbery texture and leave a chalk like taste in your mouth. I would avoid these until they bring out some 'new and improved' brands.
And no chocolate or ice cream! Have sorbet instead.
It is surprising how many foods contain milk. The other day a put a bag of popcorn back on the shelf as it contained milk.Do check the packaging. There are a lot of foods that appear to be be natural, no additives etc. When you read the list of ingredients you will be surprised. I had a 'health bar' the other day labelled as 'Strawberry'. When I read the ingredients the strawberry was 1%.
I also avoid wheat as my Dietician believes I have an intolerance to it. Believe it or not, it is harder to find wheat free foods than dairy free!
Coconut, Palm and Lard are other 'foods' that should be avoided due to the fat.
I have read papers written by a number of specialists that warn parents (as I am yet to find any publishing's about adults with MCAD) about their MCAD child and obesity. I would not worry about this. I am a perfect weight for my height and have never been particularly over or under weight. You just have to be sensible and keep on top of it. Do not buy into fad foods aimed at weight control or calorie counting. When you have MCAD you do not need to worry about calories. You need to worry about not getting enough. Plus they never work but I won't get on my 'soap box' about that!
My advice;
It does not have to be expensive. Local farm shops are a great place to buy and only provide seasonal produce. You know you are putting the best into your body, you get some great offers and every time you go, there is something different.
If I find any goods foods, I will let you know!
It is recommended that people with MCAD eat every 4 hours. I am terrible with this and always forget. I eat when I am hungry however I do always have sugary drinks throughout the day to keep the fire burning.
Complex carbohydrates are your friend. So think brown, wholemeal foods. Some people do not like brown bread, rice etc as they are used to the white varieties. You just need to retrain your brain. It is worth it. The complex carbohydrates take longer to break down giving your body a slower release of energy. This helps to stabilise the blood sugar until your next meal.
Always keep cereal bars, glucose tablets etc to hand.If you are out for the day make sure to take some supplies with you as you never know when you may get caught out and need something to keep you going. I have been caught out before and you start to panic.
With regards to eating every 4 hours, this is not possible unless you want to get up in the night. My dietician suggested I eat a sandwich before bed. With that amount of carbs I would never sleep! I always start the day with a pint of fresh fruit smoothie and a shot of Aloe Vera. The natural sugars in the fruit will give you the instant hit you need from fasting all night and the Aloe is great for your digestive system. Alongside this you can have some slow release carbs with that. Perhaps a bowl of porridge.
Avoid foods containing dairy products. Current research has found that they contain a particular fat (mono-triglycerides) that people with MCAD can not process. This then sits on the Liver and can make you feel quite ill. Over time the build up of fats can lead to Liver problems. This is different to being lactose intolerant, so check the label.
I love milk and cheese. The dairy free options are not great but considerably better than what they used to be. Soya milk is a great alternative and you can buy it with added calcium. If like me you do not like the taste of natural soya milk, try the flavoured varities. The chocolate flavour tastes the same as a regular milkshake. Dairy free cheese is not wonderful however the soft spread varities are pretty good. If you buy a flavoured variety such as sweet chilli or chive, you would not know it was dairy free. The hard cheeses have a rubbery texture and leave a chalk like taste in your mouth. I would avoid these until they bring out some 'new and improved' brands.
And no chocolate or ice cream! Have sorbet instead.
It is surprising how many foods contain milk. The other day a put a bag of popcorn back on the shelf as it contained milk.Do check the packaging. There are a lot of foods that appear to be be natural, no additives etc. When you read the list of ingredients you will be surprised. I had a 'health bar' the other day labelled as 'Strawberry'. When I read the ingredients the strawberry was 1%.
I also avoid wheat as my Dietician believes I have an intolerance to it. Believe it or not, it is harder to find wheat free foods than dairy free!
Coconut, Palm and Lard are other 'foods' that should be avoided due to the fat.
I have read papers written by a number of specialists that warn parents (as I am yet to find any publishing's about adults with MCAD) about their MCAD child and obesity. I would not worry about this. I am a perfect weight for my height and have never been particularly over or under weight. You just have to be sensible and keep on top of it. Do not buy into fad foods aimed at weight control or calorie counting. When you have MCAD you do not need to worry about calories. You need to worry about not getting enough. Plus they never work but I won't get on my 'soap box' about that!
My advice;
- Eat natural, home made meals. You do not know what is in packet food which is risky if you have MCAD.
- Complex Carbohydrates are your friend.
- Keep a cereal bar/ snacks on you.
- DO NOT eat Dairy, Coconut, Palm or Lard products.
- If you do not replace dairy with foods containing added calcium, take a calcium supplement, particularly if you are a woman.You do not want to add osteoporosis to your list of ailments!
It does not have to be expensive. Local farm shops are a great place to buy and only provide seasonal produce. You know you are putting the best into your body, you get some great offers and every time you go, there is something different.
If I find any goods foods, I will let you know!
Tuesday 25 June 2013
MCAD and Growing Up
Growing up I did not realise I was different from any other child, just that I was unlucky in catching most of the 'bugs' that went around. This did mean missing school which I was not happy about however I did not mind too much as I knew I would spend the day on the sofa, wrapped in a blanket, a big bottle of lucozade, bag of sweets and my favourite Disney movies...... not too much has changed there!
It was an accumulation of little things that started to make me realise. The first one being that none of the other children were allowed sweets when they were ill nor were they off school as often as I was. I continuously had tonsillitis and eventually had my adenoids removed. I used to go through phases of what my mum called 'growing pains'. Mum would have to massage my legs as I would cry with the pain. I still get these and obviously I am no longer growing. It is a build up lactic acid in the muscles which is one of the traits of MCAD.
I also continuously had terrible ear infections and bad hearing. For years I was taken to and from the ENT specialist. They put gromits (small tubes that open the ear canal) in each ear, I had to sit in one of those horrid booths and click a button every time I heard a noise (I am certain this has given me mild tinnitus) and constantly had magnifying glasses shoved in my ears. After approximately 7 years the diagnose 'she is probably just daydreaming'. Really????
I have recently learnt that specialists believe people with MCAD are susceptible to inner ear problems (I agree) and degenerative heart disease (I damn well hope not).
The second realisation that I was different was when I reached the end of Primary School and as a treat the school would take the 'Leavers' on a week away. My mum sent my paperwork back with lots of forms and on the day of departure I was given lots of energy sweets, as were the Teachers. Throughout the trip the Teachers were constantly asking me if I was OK. I thought there must have been something wrong with them to keep asking me.
It was at this point I was told that I had MCAD and that it meant I was different but I did not understand why. All I knew, keeping eating sweets.
As I started secondary school and puberty set in (what a pleasant experience that is!) for the first time I started to notice I was different. As your body changes and your brain rewires itself for adulthood a lot of energy is used up. I became easily tired out. I had to wear a Medic Alert bracelet for the first time. Teachers would tell me off for wearing jewellery and then when I showed them what it was, the other girls would make a fuss. I had to keep energy tablets in my bag, the other girls thought these were sweets and would harass me to have one. In the end I became so conscious of being different, I dumped the sweets and took off the bracelet. Once at school my reserves were so low I asked friends if they had any food they could give me. No. I asked if they could take me to the shop so I could buy something to eat. No. I slumped in a locker room and cried, barely enough energy to lift my own arms. I did not know what to do. I called my mum, who called the school. A teacher found me and gave me a cereal bar.
That was a traumatic experience.
It was at this time also that I went to Cardiff University Hospital which has a Metabolic Genetics department. Here I met my Consultant and Dietician, who thought it would be a good idea to tell me, at 13yrs old, 'when you have a baby you can be our Guinea Pig'. WHAT??? That has forever haunted and frightened me. I have 'sacked' them now. They finally got the hint that I would no longer attend the appointments. On every occasion I have been ill and the on-call Doctor has tried to contact them for help, they were either unavailable or not there at all. My Dietician told me I could not eat Coconut. I asked why 'because your not supposed too'. Wow, thanks. That's a great answer. They were more concerned about taking samples of blood, trying drugs, measuring this, that and everything else but they could not offer support and help to me. I think I will stick with Mum thank you.
As a teenager I had/have terrible skin and cramps were a constant problem. I was told I would grow out of both. That was 15 years ago. I am trying my second treatment for Acne and have to avoid certain foods and have an implant for the cramps. I believe underlying all of this is the MCAD. If it can cause problems in your inner ear why not your skin, digestive and reproductive organs? I am the only member of my family past and present, to have had the problems I have. Usually these things are hereditary.
Every month like clockwork us ladies have a great time.....not. From the age of 13 - 24, I spent one week each month lying in the bath tub with my head over the toilet throwing up bile as there was nothing else left in me. I would be as white as a sheet, sweating, weak and exhausted. That works out to be approximately 572 weeks or 4004 days vomiting. I had been assessed by almost every gynaecologist in the county, given every type of pill and pain killer. Nothing worked. Again I was told I would grow out of it. This did not happen and each time I would almost breakdown crying at the hospital. They did not understand that with MCAD it was dangerous to my health to be this ill each month. Some months were so bad my eyes would glaze over and I had not enough energy to support my own head.
After years of my constant campaigning to the doctors, a new treatment came in. Success something seemed to work. Then as always the cramps, nausea and lethargy came back. This time the diagnosis was IBS. Bollocks to that. It has to be the MCAD. It does not take 14 years to diagnose IBS. This just proves the point that MCAD is still very unknown. Guess what? The cramps and nausea have still not disappeared but are not as violent as they were.
Starting University and leaving home was the hardest thing I have ever done. The first time I had to look after myself 100%. This was the second time I trialled the drug 'L-carnitine'. It didn't work. When my Mum and I were filling out all the paperwork, we went into great detail about my condition. It was decided by my local council that i would get and extra £30 a week to help cover the food I needed. They also classified me as Disabled. I do not remember filing out that part of the form!
The following year we repeated the form, as you must, only this time it was decided I was not disabled and that I was entitled to no extra help. I am not quite sure what changed, it certainly was not me.
I found at University I was met by ignorance when it came to explaining my condition. The amount of times I have been asked 'Will you die?'. Firstly, that's rude. Secondly, yes I will, as we all will. Again I learnt the best thing to do was keep it quiet and get on with it. This led to my Mum and Step-dad driving to my University to bring me home. I became depressed I suppose. There I was trying to make my own way and failing miserably. I thought I would never be able to stand on my own two feet. I was signed off my course and I took the decision to quit, come home and start over.
I still made a lot of mistakes and tried to push myself so that I could keep up with my peers but my body could not handle it. It took almost 6 years of learning about myself, my limits, my alcohol tolerance, my body's warning signs, to finally be comfortable knowing that I can deal with my MCAD. I still have moments of worry but I have learnt to accept that I am different. I have learnt that people are ignorant of things which are different and it is my responsibility to educate them.
It was an accumulation of little things that started to make me realise. The first one being that none of the other children were allowed sweets when they were ill nor were they off school as often as I was. I continuously had tonsillitis and eventually had my adenoids removed. I used to go through phases of what my mum called 'growing pains'. Mum would have to massage my legs as I would cry with the pain. I still get these and obviously I am no longer growing. It is a build up lactic acid in the muscles which is one of the traits of MCAD.
I also continuously had terrible ear infections and bad hearing. For years I was taken to and from the ENT specialist. They put gromits (small tubes that open the ear canal) in each ear, I had to sit in one of those horrid booths and click a button every time I heard a noise (I am certain this has given me mild tinnitus) and constantly had magnifying glasses shoved in my ears. After approximately 7 years the diagnose 'she is probably just daydreaming'. Really????
I have recently learnt that specialists believe people with MCAD are susceptible to inner ear problems (I agree) and degenerative heart disease (I damn well hope not).
The second realisation that I was different was when I reached the end of Primary School and as a treat the school would take the 'Leavers' on a week away. My mum sent my paperwork back with lots of forms and on the day of departure I was given lots of energy sweets, as were the Teachers. Throughout the trip the Teachers were constantly asking me if I was OK. I thought there must have been something wrong with them to keep asking me.
It was at this point I was told that I had MCAD and that it meant I was different but I did not understand why. All I knew, keeping eating sweets.
As I started secondary school and puberty set in (what a pleasant experience that is!) for the first time I started to notice I was different. As your body changes and your brain rewires itself for adulthood a lot of energy is used up. I became easily tired out. I had to wear a Medic Alert bracelet for the first time. Teachers would tell me off for wearing jewellery and then when I showed them what it was, the other girls would make a fuss. I had to keep energy tablets in my bag, the other girls thought these were sweets and would harass me to have one. In the end I became so conscious of being different, I dumped the sweets and took off the bracelet. Once at school my reserves were so low I asked friends if they had any food they could give me. No. I asked if they could take me to the shop so I could buy something to eat. No. I slumped in a locker room and cried, barely enough energy to lift my own arms. I did not know what to do. I called my mum, who called the school. A teacher found me and gave me a cereal bar.
That was a traumatic experience.
It was at this time also that I went to Cardiff University Hospital which has a Metabolic Genetics department. Here I met my Consultant and Dietician, who thought it would be a good idea to tell me, at 13yrs old, 'when you have a baby you can be our Guinea Pig'. WHAT??? That has forever haunted and frightened me. I have 'sacked' them now. They finally got the hint that I would no longer attend the appointments. On every occasion I have been ill and the on-call Doctor has tried to contact them for help, they were either unavailable or not there at all. My Dietician told me I could not eat Coconut. I asked why 'because your not supposed too'. Wow, thanks. That's a great answer. They were more concerned about taking samples of blood, trying drugs, measuring this, that and everything else but they could not offer support and help to me. I think I will stick with Mum thank you.
As a teenager I had/have terrible skin and cramps were a constant problem. I was told I would grow out of both. That was 15 years ago. I am trying my second treatment for Acne and have to avoid certain foods and have an implant for the cramps. I believe underlying all of this is the MCAD. If it can cause problems in your inner ear why not your skin, digestive and reproductive organs? I am the only member of my family past and present, to have had the problems I have. Usually these things are hereditary.
Every month like clockwork us ladies have a great time.....not. From the age of 13 - 24, I spent one week each month lying in the bath tub with my head over the toilet throwing up bile as there was nothing else left in me. I would be as white as a sheet, sweating, weak and exhausted. That works out to be approximately 572 weeks or 4004 days vomiting. I had been assessed by almost every gynaecologist in the county, given every type of pill and pain killer. Nothing worked. Again I was told I would grow out of it. This did not happen and each time I would almost breakdown crying at the hospital. They did not understand that with MCAD it was dangerous to my health to be this ill each month. Some months were so bad my eyes would glaze over and I had not enough energy to support my own head.
After years of my constant campaigning to the doctors, a new treatment came in. Success something seemed to work. Then as always the cramps, nausea and lethargy came back. This time the diagnosis was IBS. Bollocks to that. It has to be the MCAD. It does not take 14 years to diagnose IBS. This just proves the point that MCAD is still very unknown. Guess what? The cramps and nausea have still not disappeared but are not as violent as they were.
Starting University and leaving home was the hardest thing I have ever done. The first time I had to look after myself 100%. This was the second time I trialled the drug 'L-carnitine'. It didn't work. When my Mum and I were filling out all the paperwork, we went into great detail about my condition. It was decided by my local council that i would get and extra £30 a week to help cover the food I needed. They also classified me as Disabled. I do not remember filing out that part of the form!
The following year we repeated the form, as you must, only this time it was decided I was not disabled and that I was entitled to no extra help. I am not quite sure what changed, it certainly was not me.
I found at University I was met by ignorance when it came to explaining my condition. The amount of times I have been asked 'Will you die?'. Firstly, that's rude. Secondly, yes I will, as we all will. Again I learnt the best thing to do was keep it quiet and get on with it. This led to my Mum and Step-dad driving to my University to bring me home. I became depressed I suppose. There I was trying to make my own way and failing miserably. I thought I would never be able to stand on my own two feet. I was signed off my course and I took the decision to quit, come home and start over.
I still made a lot of mistakes and tried to push myself so that I could keep up with my peers but my body could not handle it. It took almost 6 years of learning about myself, my limits, my alcohol tolerance, my body's warning signs, to finally be comfortable knowing that I can deal with my MCAD. I still have moments of worry but I have learnt to accept that I am different. I have learnt that people are ignorant of things which are different and it is my responsibility to educate them.
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