Most of my life from teenage years onwards ive struggled with waking up in the morning and always feeling tired thats got worst little by little over time. im 29 now and have a 9 year old daughter after having my daughter i was pretty normal (my normal) for a year or two, i was able to work fulltime as well as being a single parent. due to my daughter having problems which turned out to be autism (diagnosed at 5 years old) i stopped working when she was about 3 as she wouldnt let me sleep at night and i was getting up to late and was having to do 6 day weeks to keep up with my hours and was to tired while driving and one day i was driving down the street and a group of baby ducks and a mother was walking over the road and everyone else on the other side of the road saw them and stopped but i didnt (well i must have because i knew what i had done and stopped, maybe it just register in my brain they was there) and ran over them killing one of the baby ducks because i was so tired, i was so devastated by this i quit my job and stopped working. life went on reasonable normal then she started school and getting up early in the morning was so hard and majority of the time we was late getting to school. my house has been a tip for a long time because i dont have the energy to clean it and get up in the morning, at the weekends i could easily sleep for 12 hours+ and if i go to the gym i cant get up or do anything around the house for about 3 days (my friend thinks im to lazy to go to the gym) after years and years of complaining to the doctor about my tirdness and struggle to get up and being told of course your tired your depressed and have a dificult child have some more anti depressants. last summer i was finally referred to a sleep clinic thinking i had a sleep problem but didnt hear anything. last year in october i got a bad case of flu and it seems all normality (my normality) has vanished. i havent managed to go to college much (about 6 times since october) as walking is about 10 minute walk each way between the bus stop and college (im not allowed to park there so park at the bus stop). on the way to college im fine, but after a few hours the walk back to the bustop my legs are hurting and aching so much sometimes i think they are just going to give way. im then exhausted for about 3 or 4 days, cant get out of bed till about lunchtime for school and then when i get back i have no energy to do anything. in december the doctor suggested i may have ME, although i told her i didnt think i had that as i assumed it was a mental disorder as alot of people said it was and there was actually nothing wrong, anyway made a referal to immunology. also in december i had my sleep assesment. then just before christmas my daughter went on a school trip for 5 days and respite care was starting the day she got back, so i was going to have 6 days to myself. i had so many plans, was gonna go out, go cinema, visit friends etc etc and promised the social worker i would tidy the house. in the 6 days she was away i spent most of it in bed i didnt do anything i wanted to do i just spent 16 hours plus in bed sleeping the whole week. people couldnt understand how i could stay in bed that long and not go toilet, but i was hardly eating or drinking so didnt really need to go wee, and i went poo about once a week. i have an intollerance to wheat for a few years and had started eating wheat last may again and i think it must of turned into an allergy because my liver started having problems functioning and my liver results went really high, my doctor thought i was drinking to much alcohol but came home and had a look as to other reason my liver was bad the same why an alcholic was and i saw that food allergy was a cause so stopped eating wheat and my liver results have been coming down since. i mentioned it to the doctor and she said it cannot be that as i would be blotchy. so sorry back to december when she daughter was away. when she got back i was full of energy had two week christmas break where i didnt have to get up for school. did some tidying around the house and felt better than ive felt since years and years ago. i did some reading up on ME and found alot of the symptoms i had. the muscle aches in my legs and arms, the not pooing, my temperature low on average 36 degrees c, which the doctor laughed at saying its normal, if my body temp is low that it cuts down on concentration (i forget everything, to the degree that i have to have appointments ring me because i forget to look at the calender if i even remember to write them down) and metabolic rate and maybe why i cant lose weight (this was in november time) and she laughed at me sying it was normal. ive always been a cold person even when i was obese i have to wear socks to bed else i cannot sleep and i have my hands either under me or between my legs. i started taking my body temp regularly as when i had the flu in october i thought i was having a high fever and i was sweating but my body temp was around 35.5 and found this strange. i regularly took my temp and for about a month, it was never above 36.4 as i said it fluctuated around 36. so thats when i mentioned it in november. so again to christmas holidays, she went back to school and i was fine felt amazing after 3 weeks of rest, and thought well it cannot be ME as i feel better. after a few days of getting up for school and trying to go back to college i got really bad again and couldnt do a thing, couldnt tidy, couldnt get up till middayish for school i had chronic belly pains and my belly had blown up big and i looked like was about to have a baby etc etc. i went to a nutritionist in january and she told me she thinks i have a yeast infection in my belly. so told me lower my GI intake and have some live bacteria tablets and magnesium. my belly has now gone down i dont have the pains in my belly. but everything else has stayed the same. i struggle so much now with house work and getting up social services have sent someone out to wake me up in the mornings for school and people to show me how to tidy my house. they was here 3 hours and i had to help after an hour i couldnt move, i was in pain everywhere. i havent been to college since january and im just so exhausted all the time. with being woken up at 7.30 am every morning for school and struggling to sleep at night not matter how tired i am, and i dont sleep well either. ive never felt this bad, my eyes are sore all the time, my body just aches and feels bad all the time. my sleep assessment follow up appointment is in may and i managed to get the secretary to tell me what conclusion they had come to, and they said one side of my brain is not doing something the same as the other side of my brain is doing and thus causing hypersomnia and they are going to diagnose me with essential hypersomulance. but ill have to wait till may to discuss it with the neurologist. now the fact ive always been tired i can understand that diagnoses although im going to insist they find out why my brains doing that. but the thing thats troubling me the most is to why i have got alot worst since the flu in october and the changes in my body and evergy levels and ive always suffered from headaches but was told its stress. immunology wrote to me in the end of march saying they wont see me and my referral doesnt fit their requirements, the chronic fatigue place wont see me because i dont fit their criteria, now looking at the websites the only thing i dont suffer from is the sore throats. so i wonder what the doctor has told them, as they think im a hypercondriac and depressed and now referring me for a psychiactric assessment. im not depressed the only thing depressing me if anything is how tired i am all the time. yes my life is tough with my child, but i have goals, and my mood is fine when im not to tired to function. ive always struggled losing weight even when i was on a calorie diet and went down to about 800 calories a day and still not losing weight. since october because i havent got the energy to make food, ive lost about 25+ pounds and havent even tried to lose weight as thats the last thing on my mind at the moment. only reason i havent lost more is because i have been eating alot of take outs. i cannot carry on like this for much longer.
im sorry this is all muddly and i hope its readable.
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