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It is Sativex that I have been fighting for. I did find my appointment on Monday quite entertaining, the doctor couldn't look me in the eye! 🙂 He gave me what I wanted though so I was as nice and polite as always. I don't like being nasty or argumentative! Too much stress! Hahaha
I didn't discuss any solutions that don't involve medication as I am more than happy to take this drug! 🙂 I have, however, come off most of my medication in the last few months. I now only take things that treat the symptoms of MS and supplements to try and repair the damage other treatments have done to my body (iron for anaemia, multivitamins for my stomach). I had enough of doctors playing God with my life so I have come off all of them without doctors input and feel a LOT better in myself! My sleep patterns are still all over the place but, as I do not work, I do not have to be too worried about them just now. I'm sure that, once I get all the unnecessary drugs out of my system, my sleep pattern will settle down but, for now, I can cope with it 🙂
'UliHarp' wrote on '20:“I was fed up of feeling like a failure because my head and body seemed to be unable to coexist” You said it, right there. In an ideal world, I would be up by night to match my head, and asleep by day by my body. I feel most creative and motivated to both start and complete everything from daily tasks (like dishwashing or running errands) to work (like writing or other things) when it starts getting dark, but tragically, we live in a sunshine-fueled world. I attribute most my lifelong sleep irregularities to this; as a child and all throughout schooling, I dragged myself through days and slept as soon as I got home from classes just so that I could be up at night when my mind was most active. It was confusing for teachers, what with my sleeping during class and not being attentive, but flourishing with overnight assignments. I suppose they took it as an underachiever attitude; they frequently encouraged me (and woke me up) to participate in class because they knew I had the ability, but until nightfall, I admittedly never took to it. Consequently, my mother used to enforce bed times for me as a teenager, and I used to have to write or do homework in secret while she slept. There even came a point when she once threatened to take away my computer because she knew I used it at night. Needless to say, all the tiptoeing around my mother and precarious balancing of sleep schedules made it easy to fall into bouts of insomnia. Since finishing school and moving out of my mother's house, I've been less stressed about syncing with the rest of the world, but that doesn't mean it's any less cumbersome. I feel bad, being up at night and not wanting to make noise for fear of waking my roommate or neighbors, among other things.
And you're right; rambling feels good. I already feel a lot has been lifted off my chest, simply from looking at it in retrospection and sharing. I markedly feel less alone about my night peaks and day slumps; explaining it to few friends, they never seem to understand what I'm saying. Here, I see it's quite common.
Well, I guess I'll end my rambling at here for now. Thank you for warm welcome, and I hope that all those momentous letters come to do good! It would be rather exciting, if David Cameron replied! Maybe, to pass the time, I should write a letter to Emo Philips… haha. And hearing that you're thinking of writing a book; if you do start one, I'd be interested to know what about! What was the Poe quote: “Those who dream by day are cognizant of many things which escape those who dream only by night”? Those of a feather… well, you know the rest.
Until next time!
-Uly
I will let you know if I do start a book and if Mr Cameron replies!! I doubt it though, he won't listen to someone without a piece of paper to say they know what they are talking about!! Life experience doesn't count for anything in this world, unless it is a 'proper' life you've led!
I can completely understand your school problems. I was diagnosed with CFS (Chronic Fatigue Syndrome) when I was in high school and ended up having to repeat a year as my attendance was less than 50%. I still got better exam results than most of my friends as I can quite easily learn things but only in my own time!! Teachers never understood me but, having a label for my tiredness made them sympathise a little! I know there was nothing medically wrong with me but, as school is during the day, my head and body just couldn't keep up with the pace of it!
Doctors think there has to be an answer for everything but I think when it comes to sleep patterns, some people just thrive better when the rest of the world is asleep!! There is nothing 'wrong' with that, it just doesn't fit with the 9-5, monday-friday world!
Glad you see that 'weird' sleep patterns are much more normal than you thought before sharing with us all on here! You're in the right place!! 😀
Maria xx
Hi Uly,
You sound just like me, head wakes up when the sun goes down! haha. I often end up writing loads of stuff down during the night and coming back to it in the morning! I have never been a great talker but I have recently discovered how much I love writing! So far, my insomnia has inspired me to write letters of complaint to my Neurology consultant in charge of my MS and David Cameron!! I was fed up of feeling like a failure because my head and body seemed to be unable to coexist! My head would be awake when my body wanted to rest but my head wanted to rest when I needed to physically do things like doctors appointments etc.
I sat for about a week just writing the letters, always after midnight! It helped clear my head a little! I started to be able to sleep a little bit better but I'm starting to struggle again so I'm going to write another letter to David Cameron! My neurologist did actually reply but Mr Cameron didn't so I have more things to say to him! Haha. It might be petty but I would love to be able to write books, I have so many ideas but my MS makes it hard to just live day to day without stressing myself out about finishing a book or anything!!
Most of the ideas I have are common sense applied to politics with references to philosophy, religion and entertainment but I wouldn't have a clue where to start and I tend to ramble a LOT so any book I did write would probably make as much sense as this reply does!
Hope that rambling on here helps you crack your sleep problems!! It is a great way to get things out of your head and one less thing to buzz through it while the rest of the world sleeps!!
Maria xx
Not been on for a while, sorry guys.
Lena and I split up so had a lot going on in my life recently and not been feeling up to talking about stuff, and I seem to do nothing but sleep or else I'm not in house. Sorry guys.
Hope everyone is ok. I will become more active again soon though, I promise!
Maria xx
I was referred to a psychologist to deal with my MS. I had MANY psychological issues but I had them all in my head! I was afraid of authority my entire life and was suicidal through most of my life too. I have realised that I am happier around people I trust but, in my world, only my best friend and mum were my only points of reference because I was always determined I knew what was best for me and rebelled against the people I knew and loved, I was stubborn and lost myself in my education! I knew I could do better than my family but I didn't know how. I thought that learning how to do everything and be independent would be the answer but, due to bullies picking on me my entire life, I just went along with what I was told was 'normal'.
It took meeting my partner to realise that my life was always lived the wrong way around. Not because I wanted to live it that way, but because I had to!! I was left handed.
So I always questioned things! Even my own thoughts.
This is wrong now, I know that but only because I figured it out for myself!
Everyone has that voice inside their head that tells them what is right but some people are too scared to listen to it so they pop pills from doctors. These don't deal with the problem, they just mask the pain inside!
I have now met my partner and I am so happy it has turned my complete world upside down! So much so that I realised I was always living my life through other people, anyone I could hold on to.
My partner is my best friend, my lover, my world. Without her I couldn't function in this world! She has saved me from myself so now I have a future.
I only realised that when I was questioned by someone else and didn't understand their theory, so I taught it to myself and I am more confused than ever but in a good way. We are brought up in a very sexist, very money orientated world so women feel useless and men think they know everything! This just means that men feel dominant but, without the women looking after them emotionally, they would fall.
My partner is also female and it made me realise up to that point, I was a stubborn kid and always wanted my own way but I knew from a young age how to use emotional blackmail to my advantage but, I do not care for material things so I went back through my life in my head and accepted what happened in the past. But it is in the past, it should be left there, not dwelled upon.
If you are unhappy in life it is either money or emotion that you are lacking but only you can tell you which one! The answer is not in a book, or a doctors office, it's within so look there!
I hate religion because I think they are hypocritical but that is just my OPINION so don't get upset or angry with me, the way you respond to the advice will be enough to make me know if I am right or not!
Thanks
I have written my neurologist a letter saying that if he does not give me what I know will work then I will stop taking all the medication that he has prescribed for me and he can deal with the consequences!!
Was first time in my life I was so angry that I actually done something about it!
…worried he'll withdraw treatment I'm on or something but I'm sure I can go above him and get put back on it so, know I'll be ok!
I will update you all when I get a reply! 🙂 x
I believe that there is no such thing as a democracy any more!
We all have the right to vote, so that must make it a democracy…why?
When we are given the 'right' to vote, we must choose between a SET number of people!
In Britain, you pretty much have 3 main parties.
Last election day, most of the UK were sick of every politician in the country due to the 'expenses scandal'!!
That meant that people who would normally vote, gave up! I did, but I know for a fact that every member of my family/friends that didn't vote said “they're all the bloody same” Which I did agree with but knew it was important to vote so I went for Lib Dem because they have always been the “alternative” party.
When the votes were counted, Conservative had majority but not with enough to win the prize on their own so 'persuaded' Nick Clegg to sign up with them! Swap the word persuaded with 'bullied' and I reckon that would be more true, but nobody knows!
Once Cameron and Clegg were united in a coalition government, our country started to fall apart!!
Cameron is in it for what rich people can get out of Britain in monetary terms! Clegg, according to his party, was going to focus on student etc etc. Since the 'coalition' has had CONTROL; they have put more pressure on people without jobs; that are disabled; that have mental health issues, and so on by having review after review of benefits! Making the poor, poorer and more miserable than they already are; Making the rich, richer and more arrogant and selfish than ever before!
I want to understand why Clegg went with Cameron when he could, quite easily, have gone with Labour, the other party – whose policies were along the same lines as Lib Dem! In my opinion, Clegg wanted to be known as Prime Minister in his lifetime so went for the glory and power, instead of a HAPPIER world for the majority of British people!
Britain are known for their high teen pregnancies, STI's, binge drinking, smoking, drug taking and crime! They might be known for other stuff too but, I don't care about those ones!
As a society, being different is WRONG!! Yet we are not allowed to discriminate!
Long story short…there is no COMMON SENSE left in politics any more!
The poorer people are rebelling by not working! They would quite happily leave the country but they can't afford to so it's a vicious circle!
The richer people are following what the government say. In doing so, they are getting richer! But they then have the cheek to complain about the poor people!
In my opinion, if they don't like it…MOVE!! They can afford to. If they don't want to then that is THEIR CHOICE! As such, they should stop complaining!
This, obviously, is not going to happen! But, surely, this should be the point at which the PM steps in and does something!
Politics are too complicated! They write their manifestos in 'proper' English, so the only people understanding what they are going to do are well educated people.
Have you ever tried reading Shakespeare?? I had to read 3 different ones in High School and have read NONE since because I never understood a word of it until our teacher translated!! That is what we need to do to POLITICS!
In a fair and just world, there would be another election but, instead of having to choose between the better of 3 evils, there should simply be
Government [ ]
No Government [ ]
People have to UNDERSTAND what voting is! Most people I know who don't vote are so annoyed and frustrated with Britain! They know what they want to do with their lives but, because of certain circumstances in their own past, may not have the right BIT OF PAPER to say they can do the job they want to! People are so disheartened by failure that they give up. Some commit suicide, others get depressed and go on tablets, most of which have “can cause suicidal thoughts” on the label! Where is the sense in that?!!
There were 29,691,380 votes counted last year in the general election in Britain
Doctor's wrote 39,100,100 (approx) prescriptions for anti depressants in 2009, and more in 2010 but couldn't find figures online.
That was just in England too!
If politicians spoke in normal language, maybe more people would listen! They have spin doctors and probably 20 different people that 'correct' anything he does even contemplate writing himself and nobody believes a word of it anyway!
Replace their spin doctors with top class comedians and there might be a swift change in the language that the public get to hear! But probably also the truth might be told so we KNEW EXACTLY what we were voting for!
Only the well educated can understand politics so, if you ever fail at any point in your life, you will remain a failure until the day you die because you have the right to vote, but nobody has ever explained that you should if you are not happy in your life but happy in Britain!!
Does that make sense?
Any questions, just reply and I will try to answer them! 🙂
I just read my first post back and realised it sounded really nasty but I had just had an argument with my neurologist on the phone earlier that day and needed to get the thoughts out of my head! lol
Here's a better introduction…
My name is Maria, I am 26. I live in Dundee, Scotland, with my fiancée, Lena. I love everything about my life, except doctors!
I have had MS for 4 and half years now. Without that I would never of met my girl so I can cope with that! 🙂 I have many other problems too but this isn't a medical board so won't tell you any more! lol
I love my car, it's got big batman sticker on the bonnet! I am a big kid! lol. I have lots of children in my family so it gives me an awesome excuse to act like one! haha
I love comedy! Could watch stand up shows all day, everyday!
I love going to the cinema too! Films are awesome way to escape from 'real' life! 🙂
I'm sorry for my initial post being quite horrible, but I needed somebody to rant at and my Mrs goes to bed early (she has MS too)
From now on in, I will not be as grumpy! I may have the occasional rant about doctors or government but will keep them to a minimum! People on here don't need me depressing them even more with all my problems!
Sorry again,
Happy Maria service will resume this evening! lol
🙂 xx
I have never been a good sleeper! I used to stay up until 4-5 in the morning and drink a bit too often! That was long before I got diagnosed with MS though. I have never been able to relax enough to actually sleep! I go to bed at a certain time to try, as doctors have suggested, but I just lie there for hours. I don't have a clock in my room any more, so I can't see the time. I have tried EVERYTHING a doctor has told me in my life but still find it hard to sleep 🙁
I have read it back and realised it was a very aggressive first post but it was the same night I had fought with my doctor on the phone! lol.
I will re-do my post! lol
