Everything all at once

[Edie]

I'm having so many problems at the moment and it's all getting on top of me. Sorry, this post is way too long, but it just all fell out at once.

I have Asperger's syndrome, which causes me to have social difficulties, and sometimes I can't communicate things well or accidentally upset people. A few times I have even made people feel physically threatened even though I have never come remotely close to hurting a person. Because of this I have become very socially anxious. But my anxiety far outweighs the risk of things going wrong.

I'm having some difficulties in college, particularly in one of my classes. My tutor for that subject seems very nice and I think she would want to help. If only I felt able to ask. I just think she is going to get very fed up if I keep asking every time I need help, because I really do need a lot of help in this subject. Other subjects are going well, some very well, I don't worry so much about asking for help with those because I know it's only occasional and I won't annoy my tutors with constant asking.

I am way, way too passive, and just go along with what other people want so I don't upset them. I have a support worker at college, the college are being paid for someone to meet with me for an hour a week. This hasn't happened for the last 3 weeks of term and my support worker wants to support me via email only in the new term. I am entitled to weekly face-to-face support and could put my foot down and insist on this. But I don't want to upset the support worker as I want her to support me in the future, especially as she was so very helpful in the beginning!

I also have Chronic Fatigue Syndrome/CFS. This makes me feel very tired all the time, interrupts my sleep, and causes a lot of aches and pains. I have been managing it well after a lot of help from the hospital and occasional use (once a week) of zoplicone sleeping tablets. Before I was taking zoplicone I was repeatedly getting into cycles of not sleeping, leading to severe depression episodes and just feeling really ill. I have not had a mental health crisis at all since taking zoplicone weekly, and my depression has been mild and stable. My GP has suddenly decided I am addicted to zoplicone and won't prescribe any more. He says 5 hours sleep a night is way more than average, that I don't need any more sleep than anyone else, and that I am obsessed with sleep. He says I need to forget about "this fatigue syndrome thing you think you have," and that a third of his patients have exactly the same problems as me. A third of his patients have Asperger's, CFS, IBS, anxiety and depression? That doesn't say much about his skills as a doctor really does it!

As I have moved about a bit I have been diagnosed with CFS by 3 separate consultants, and my previous GP was very supportive of my use of zoplicone and agreed that stable sleeping patterns were key to maintaining good (well, as good as it gets for me) physical and mental health. Unfortunately I had to get a new GP as I have moved house.

I was totally shocked when my GP said I was addicted to zoplicone. Obviously I feel strongly that I really want to continue taking it because of the stable health it's given me, but I really don't feel that I am craving it. I am now suffering from poor sleep, worsening tiredness and pain, and worsening depression, but I feel that these symptoms are just a return of the symptoms I used to have, but my GP says they are withdrawal symptoms.

I ended up in A&E on Christmas Eve with backache, I was lying on the floor crying and it felt like I was being stabbed every time I moved. The A&E doctor prescribed me strong painkillers that made me sleep, and diazepam, as it works as a muscle relaxant. My GP will be livid when he finds out! My back is much better now and I've stopped taking the painkillers and diazepam. I even feel a bit silly about going to A&E with a backache, but it really was unbearable at the time.

I really don't know what I'm even thinking any more. I really don't believe I'm addicted to zoplicone, but denial is a sign of addiction, so I don't know. I want the zoplicone so much and can't get enough sleep without it, so maybe I am addicted to it.

I'm also being investigated by the gastroenterologist. I think I only have IBS, but he seems to be overrreacting and carrying out many intrusive tests, none of which reveal anything, except he says he saw a stomach ulcer on my endoscopy. But I looked them up on the NHS website and I don't have any of the symptoms of a stomach ulcer. My symptoms are much lower down in my gut.

I have to comply with whatever the gastroenterologist wants, because if he can't find anything he's going to suggest I continue taking a low dose of codeine that slows down my guts, as it has been managing my IBS extremely well for 4 years. It has completely changed my life, my IBS was so bad I could not even get to the toilet on time when I was in my own house, and I was frequently missing work and in danger of losing my job. I basically lived in my bathroom. These days I can actually go places where I won't have access to a toilet for an hour or more! My GP also thinks I am addicted to codeine, so things are getting quite bad while I wait for the gastroenterologist to make him give me them again. I really don't think I'm addicted to codeine either, I think I'm just addicted to not pooing my pants.

Everything just seems so horrible at the moment. I'm falling behind at college, I'm getting bad IBS and repeated hospital appointments for waste-of-time tests with the gastroenterologist, I'm knackered and in pain in every muscle in my body. I keep fainting because my food passes through too quick to absorb any nutrients, and when I wake up in the mornings I can't use my hands and I can hardly walk, keep bumping into walls, because my muscles are too tight. College days are a really early start, as it takes about an hour to loosen up my muscles so I can get food and dress myself, as I have to leave the house at 7.30am.

[Oosh]

Hiya mate

Ask the tutor for help. It's her job. It'll be ok. Don't worry. It's a normal request.

Tell your support worker you feel you still need some face to face help from her. It's a normal request. She won't think negatively of you. If she comes up with a valid reason for wanting to try no face to face then give it a chance. If after a week or two you want face to face then tell her exactly that. You tried it, you feel you need face to face. It'll be ok. Don't worry. It's a normal request.

Sleeping tablets are addictive. Trust your gp. He's telling the truth. You at least need a break from them before trying them again. Stay off them for now and give it a chance. Addiction to meds like that isn't pleasant so be thankful your gp is looking out for you.

It's probably the fatigue you need to fix as opposed to you needing sleeping pills to get you the sleep you feel you need.

If things don't improve in a few weeks tell him.

Let the gastroenterologist do his tests and treat you based on what he does or doesn't find. Give it a few weeks and report back to him if you still have problems.

Codeine IS addictive. People are getting very messed up on painkillers these days. Let the experts treat you. Trust them. Take their treatment, give it a chance. Then report back to them with any symptoms you have.

The best thing for fatigue is diet and exercise. It doesn't have to be extreme. Take up swimming, walking, hiking, something.
Your body will become oxygenated, your head will clear and you'll feel brighter and more alert.

Make sure your diet is good. It makes a massive difference.

Hang in there mate. Things will improve.

Dave

[Edie]

I used to do a lot of exercise before I got the CFS. I tried to pretend for ages that I wasn't ill and carried on doing as much as I could. I made myself worse and often ended up in dangerous situations by going off walking and collapsing. The advice from the consultant was to pace myself, instead of doing myself in one day and collapsing for the following two. I get so much more done now my energy levels are more even. It's given me so much hope that I can manage this illness, rather than the other way around. Until I started uni anyway, now I'm in pain every day and barely able to dress myself some days.

Diet, yeah, I can't actually stand up long enough to boil a carrot. I eat fresh things when I can, but that's not very often. Without the codeine, it comes out looking pretty much like it did when it went in anyway, I don't think there's much point worrying about it when I can't absorb it anyway. My next appointment with the gastroenterologist is in March. Last appointment in December he said he would write to my GP to reinstate the codeine pending test results, but my GP hadn't received it and thought I was lying.

[dottielottie]

Hugs babe xx

[Edie]

I managed to get a really good sleep last night for the first time in AGES. I feel so much better today. I've got a lot of work done on my assignments and even managed to hoover the house for the first time since some point before Christmas, which was nice considering the cat puked in loads of places on new year's day.

Got a few errands to run tomorrow, then it's back to college on Tuesday after the Christmas break. Hopefully I will get a decent sleep on Monday night, because I've been relying on the zoplicone to get enough sleep to see me through the long day on Tuesdays until now.

Social Services are coming to deliver me a tall stool for my kitchen next Monday, so I can cook sitting down. And a sock-puller-onner, for people who can't reach their own feet. Plus a special thingy to help tip me out of bed in the mornings, it's going to be like Wallace and Gromit! How sad am I, I am well excited about Social Services