Keep going!

life isnt about waiting for the storm to pass,

 it's about learning to dance in the rain

I would love it if you left comments below telling me about your experiences. Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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SAD lamp

I don't know whether you have ever experience that you CFS symptoms are worse during the winter months, for me there is a massive difference and something I have found to help with this is a SAD lamp or Seasonal Adjustment Disorder. Using this lamp every day for 15mins has made a massive difference, I noticed an improvement after just a week of using it and now if I miss a day of using it I notice that I am not as awake as a day when I do use it.
They are not that cheap but I definitely think that this is one of the main things that has helped me to recover. The branded version is Lumie (http://www.lumie.com/collections/light-therapy-sad) but you can also get generic ones from places like amazon. I have a generic one made by a brand called Rio, I got this from amazon and it was £49.99 (http://www.amazon.co.uk/Rio-Energy-Light-Therapy-Lamp/dp/B001PIJF48), there are lots to choose from: SAD lamp.


I would definitely recommend this if you do find that your CFS gets worse seasonally.

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Get up easier!

Getting up can be really hard, a Lumie Body Clock could really help you; it uses similar technology to an SAD lamp (have a look at my post on SAD lamps), it is basically a lamp that simulates the sunrise so it very gradually wakes you up, even if you are not going to school, it is important to manage your sleeping pattern so you dont over sleep (it is important that you have deep sleep rather than lots of light sleep; have a look at my post on this too). It's just a suggestion, let me know if it works for you.

 

I would love it if you left comments below telling me about your experiences. Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Bringing in exercise +life update

Hi, I haven't posted in a while, sorry! But towards the end of the school year I had lots of exams which really tired me out; no only the fact that lots of revision was involved, but also because I am a worrier, I know that it is bad for me and it only makes me more tired, but I find it really hard to not worry. Also I keep reminding myself how much better I am in comparison to one year ago and two years ago, it makes you feel better to know that you are improving; maybe you have had a relapse but from that you can learn that whatever caused you relapse you will know what not to do again, look at the positives!
Now I have had a couple of weeks off from school and had a rest I am feeling much better; as it is the summer holidays, and I don't worry about school as much I find I have a lot more energy as well as the fact it had been quite good weather for where I live. Gradually I have been trying to introduce no-strenuous exercise such as walking, even if it is only a 2 minute walk to begin with, I have been able to build it up to about half an hour, even if it is not very far and I have walked very slow, I always remind myself it is better than nothing!
I would love it if you left comments below telling me about your experiences. Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com I love chatting to people via email, so even if you just want to chat, email me :)

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Relapse.

Recently I haven't put on as many posts as I would like because I have had a little relapse, recently I have found that the main time that I have relapses is if I get a cold; however when I was bad so many things would trigger me off over doing anything really. I think now if I were to do to much it would still set me back but now I know how much is too much for me the majority of the time.
Another time when I might have a relapse, and is meant to be one of the ways that teens can get CFS, is when you have a growth spurt, which is something that my mum thinks might be happening at the moment, this is really annoying because it is something that is unavoidable especially when you are a teenager.
Relapses can be really frustrating but I think the main thing to do is try to avoid them! It is hard, especially when you are feeling better there is so much you want to do, so you need to try to hold yourself back a bit even if you are feeling much better. With trying not to get colds, I have just been taking lots of vitamins, but other than that I don't know how you can avoid getting colds, any suggestions (leave some ideas in the comments below)?
Will try putting up more blog posts as I am starting to get better from this relapse.

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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'Peak' times.

I find that certain times of the day are better for me, and I have more energy. For me my 'peak' time is towards the end of the day usually between 5-7 pm. Even though I have been up for the rest of the day I feel like that is when I am at my best. This is usually the time when I will do things like home work as I find that when I have to concentrate a lot on something, that is what wears me out. I think that iris important that you recognise this time for you, maybe you already have and use that time to do things that you know will particularly tired you out. I don't know if anyone else experiences this, let me know in the comments section it would be really interesting to find out!

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Mini tips: Box sets.

I watched A LOT of TV while I was off all of the time and I found Series to be better than a Movies because:

• They are less tiring because they don't demand as much of your attention (wearing you out);
• They are in small segments, easy to stop and start watching them;
• They go on for a longer period in total time.

I really enjoyed watching series especially when you watch them back to back, maybe you have a box set, or Netflix is really good for a collection of series, I just found it good entertainment when I felt like I could do nothing else, and if you are some one who watches a lot of TV try watching series rather than movies, the occasional movie, especially one you have seen before, great, and I love trips to the movies but on a daily basis try box sets!

One of my favourites which might not be to everyone's taste but I find really funny is: An Idiot Abroad.

I would love it if you left comments below telling me about your experiences. Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Social Tiredness.

Since I have developed CFS I have found social situations to be tiring, this can just be in school when I am not directly interacting with any one but maybe just listening to a teacher and having to focus and absorb what they are telling you. Due to the fact I was off school for so long and often in large blocks I felt like I didn't ever know what was going on and in the end would try to avoid social situations at all (for example going into for the two lessons before break then going home or the two lessons between break and lunch and avoiding both lunch and break, so the only time I would directly interact with people would be small talk during a class) this just made it worse and you should really try to avoid doing this kind of thing, even if it tires you out try to just stay for five or ten minutes, make sure that you don't completely cut that part of your life off; if you are not going into school at all then try texting, emailing them just try to keep in contact in some way. I have found it quite hard to re-establish friendships as everyone's personalities have changed since I regularly went to school also I think I have lost some of my confidence in some situations and at times my social skills!
I have had friends over a couple of times over the past 6 months and the lead up to it I get anxious and excited at the same time and then overly exited when they are there because it, for me is quite a unique event and after it I feel exhausted and it is very much because of the emotional tiredness (see previous post). I just thought that I should let you know that it is something that I experience on a regular basis and recently I have been going to my schools well-being co-ordinators office, to avoid getting tired, which has been good in the sense that I have managed to say in for a school day but bad in the sense that I haven't been doing much socialising. My priority at the moment is school work over socialising and I think it has been since I developed CFS. Let me know in the comments below, what has been your priority, school or social life?

Emotional tiredness

Emotional tiredness, I find wears me out more than physical tiredness, for example if you watch an 'emotional roller coaster' of a movie. This I find is so draining and is worse because often you will not realise how much it wore you out until the next day when it hits you. So although it is hard try not to get too emotional, this includes worrying about school or getting upset about having CFS, because it is just going to make you worse and is pointless. Ways of  avoiding this is trying not to worry, get upset, cry, watching a movie that makes your upset or scared, or reading a book that makes you upset or scared; for most people, even without CFS they often find that it will wear them out.

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Next post: Social tiredness.

Day after tiredness.

On Monday I had a maths GCSE (test) and on the actual day I was really good, I didn't worry or stress the day before or on the actual day, throughout the day I was fine, in the night I felt tired, but a normal amount for the end of the day. But on Tuesday, I was really tired and had to stay off school today because I was so tired, and I still feel pretty tired, the kind of tiredness you get if you have been crying. I just wondered if anyone else finds this, please leave a comment below if you experience this too. Anyway, I have found that more than anything it is a waiting game, I have done some homework at home but only a little bit, and just wondered if anyone else experiences this and has any tips; I found it so frustrating because I thought that I had done everything right, my mum suggested that maybe I had worn myself out trying so hard not to worry and just subconsciously worried, I dunno but if you have any suggestions please let everyone know, including me!

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Mini tip: Water

Drinking water, has helped me hugely, I don't know why, I know that it is good for your health, so generally makes you feel better; so that stops the normal feeling a bit rubbish taken off the top of CFS symptoms. Water is the main thing I drink, the only other things I drink are fresh juice or black tea (tea with no milk or sugar, I like Earl Grey, and I know many people with CFS like coffee). Give it a go, it might work for you, it did for me!

I would love it if you left comments below telling me about your experiences. Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Being Positive +

Staying positive is really important, not only can getting upset be tiring but it can also be depressing, work out what works for you staying positive. For me several things work including songs that may motivate or make me feel good (my top three songs that boost my moods are 'Here Comes The Sun' by the Beatles, 'Survivor' by Destiny's Child and a new one 'Express Yourself' by Labarinth) find a song that makes you feel good and when your feeling down, listen to it, it really can make a huge difference. Other ways to stay positive, is doing something you enjoy without wearing you out, that is why listening to music is ideal or maybe if you like reading but you find it to tiring try out audio books and podcasts, there is such a wide choice on iTunes and they are cheaper than normal books! Or if you are not too tired, maybe you enjoy painting, drawing, playing video games, basically distractions, I find, help. Find whatever works do you and do that when you are feeling down in the dumps.

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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What my symptoms were and are now.

I do sometimes struggle to recall what my symptoms were when I was at my worst as I was so tired, I have heard of all of the levels of CFS and I think that mine, when they were at their worst 6/10, I was never so bad that I had to be hospitalised or could literately not get out of bed. When I was at my worst my symptoms were: tiredness (rarely get out of bed or lying on the couch, other than to go to the bathroom), dizziness  feeling sick, loss of appetite, dizziness, headaches off and on and a constant sore throat. Through all of the tips that I have given and will give on the blog, has helped me to majorly reduce my symptoms and got me to where I am now.
Now my symptoms are nearly non existent  sometimes I get sore throats, I get tired a little bit easier than everyone else and if I ever get a cold it seems to take a little bit longer for me than everyone else. Other than that I am back to my normal self, if anything I have come out better than I was, I empathise better and I think that I have become more mature as well.

I would love it if you left comments below telling me about your experiences. Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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It is OK to feel tired!

As my symptoms have got better, when I have felt tired I have had the occasional freak out like, OMG what if I have a relapse, and you need to remind yourself that it is normal to get tired, everyone gets tired, before you had CFS you would of got tired, and you always will, it is normal. So when you feel like you are getting better, and you begin to feel tired just remember  it is normal, happens to everyone, and you just need a good night sleep!

I would love it if you left comments below telling me about your experiences. Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Vitamin B Complex.

I take several vitamins a day, but something that has made a massive difference to me is Vitamin B Complex, I don't know why it works so well but it does.On the container it says that is supports normal energy yielding metabolism and contributes to the reduction of tiredness and fatigue, it does what is says on the tin. I can tell that there is a significant difference for me in my CFS symptoms. They aren't very expensive and the tub lasts for ages, you can get them in most supermarkets or you can order them online (which is usually cheaper) from a reputable store, I often buy mine from Holland & Barrett, you can find them here: http://www.hollandandbarrett.com/pages/product_detail.asp?pid=60&prodid=667&cid=83 this is £17.99, which is really good value for money, you get 250 tablets, so will last you 250 days, the majority of the year, you can get smaller packs and there are always offers on as well.

Everyday I also take Vitamin D3, Cod Liver Oil Tablets (get the tablets the actual oil tastes horrible and is less practical) and Multivitamins, which contains: vitamins A, D, E, C, B1, B2, B6, B12 (extra); Niacin; Folic acid and Pantothenic acid. All of these you can get supermarkets and Holland & Barrett. Since I have begun to take all of these I have noticed that my immune system is better and I have got less colds, iron is something that improves your immune system, you can get multivitamins that have iron in as well which is something to look out for.
I would recommend you trying all of these, they may work for you, they may not, they could even just work as a placebo effect, I don't know, but try them!

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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Worrying.

Worrying is something that I do a lot, I am not as bad as I used to be but I am still pretty bad, especially when it comes to CFS as I am sure many of you are. Worrying is something that can really wear you out and just make your CFS symptoms worse which was probably the thing that you were worrying about in the first place, as I have begun to worry less I have noticed that it has been an attributing factor to my recovery.
When I look back now at the things I used to worry about, such as 'what if I never get rid of CFS' or 'how am I ever going to catch up on all of the school work that I have missed' but I have archived both of those things, and you can to.
Everyone has different ways of coping with worrying, one of mine is distraction, just distract yourself think of something else; for example if your worrying about the things that I mentioned earlier, think about how great your life will be when your CFS has gone and you have caught up with all of your school work, all of the amazing things that you are going to do, the job your going to get and how CFS has changed you for the better as a person. Another might be to think about it logically like in the picture below.

There are so many ways you can deal with worrying, you just have to find the one that works for you. Once you find it and use it properly it will make a massive difference to how tired you get and you will feel a happier person!

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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What not to do.

There are several things that I have found you really shouldn't do, and now that they have been pointed out to me I notice that I do get worse if I do any of these things: eat things containing MSG (Monosodium glutamate), this is a flavour enhancer and in lots of foods, crisps/chips, not all of them, if you check the packaging, often supermarkets generic version does not contain MSG. This also includes the majority of fast foods for example KFC, McDonalds as well as Chinese takeaways, it if fine if you have these kind of things occasionally as a treat but try to avoid them on a day to day basis
Shops that have garish lighting (you may have noticed this already), lighting like this, or where there is very little natural light can make you feel physically drained and something that I experienced was dizziness.
Don't worry. I am someone who worries far to much over insignificant things I try not to but I still do, I have become a lot better at not worrying, but it can tire you out so much and when it is over insignificant things or things you can't do anything about: an example of this that I would often worry about is 'what if I can never catch up with all of my school work' or 'what if my CFS never goes' well I have achieved both of these things over time and you will to. In the future I may do a how to deal with stress/worrying post, please comment if you would like me to do that.


I would love it if you left comments below telling me about your experiences.

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Managing your time/ sleep patterns

Managing sleeping patterns, I have found is really important, at first I didn't really like doing it but it has now become my natural sleeping pattern, I made sure that I would always get up around 8am. If at the moment you would find getting up at 8am impossible, cut it back gradually wake up ten or fifteen minuets earlier than you did the day before. I found that 11pm was the time when I normally go to sleep.
My phiso suggested I record when I sleep, when I do high activities e.c.t I didn't find it very useful, but it is basically a table with each hour and day as little boxes, green is rest (doing nothing at all), orange is low activity, read is high activity and blue is sleep, I recommend that if you do this you make a list of what you consider to be high activity and low activity because this can be different for everyone depending on how severe they have CFS.

If you are struggling to get to sleep at night which I did, but don't any more thanks to these tricks; half an hour before you want to go to sleep, turn off all screens, for example TV, laptop, tablet, mobile phone e.c.t. I would then read (in particular books I had read before so I didn't have to concentrate to much) or listen to the radio or music; another thing that you can do that I have become really good at (lots of  practice) is daydream!
Now that I have done this I find I naturally wake up at these times, I find it is fine to have an extra hour sleep at the weekend I am fine and it doesn't make me really tired.

I would love it if you left comments below telling me about your experiences.Or if you want to ask me anything personally, email me at ateenwithcfs@gmail.com

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At the beginning...

When I was first diagnosed with CFS I had no idea what it was, and the doctor couldn't tell me that much about it, obviously I knew the symptoms because I had them! But I still felt like I didn't know anything about what it was, I had so many questions: why have I got this? How long is it going to last? How can I get rid of it? Well I never got a straight answer to any of them, but I know a lot more now than I used to, so I thought I would share my knowledge.

My symptoms began after having a swine flu vaccination (November 2010) which gave me the symptoms of swine flu, I believe that this could of been the thing that triggered it (CFS) along side going back to school to early, when I really didn't feel very well. Throughout the winter months it continued to get worse, so we went to the doctors and they did blood tests for various things including iron deficiency; the results came back saying that I had really healthy blood, which I found almost frustrating, by now, I just wanted to know what it was. By this point I had been referred to a paediatrician, in January (2011) the doctor told me that I had Chronic Fatigue Syndrome and that there was no know cure for it but that he would make appointments for me to visit a physiotherapist and CBT (cognitive brain therapy).
Around this time was when I found my symptoms to be at their worst, I would rarely leave my bed room, never mind my house, other than hospital appointments, however I would avoid sleeping thought the day but to my annoyance would not be able to sleep through the night, even if I began to try getting to sleep at 8pm, I could still be awake at 4am.
During this time I had missed a lot of school, my mum and dad went for a meeting with my head of year and well being coordinator and they set up for me to go on a reduced timetable, where I would just go in for a few lessons a day, this began around April, although I began to seem better towards the end of the winter, I still found it really hard and would maybe go in for one or two lessons because I would be so exhausted; the next day I would have to stay off.
I am sure many of you will of had similar experiences to me or you are currently going through this, over time I have learnt different ways of dealing with it, things that have worked successfully for me and things that were recommended to me by my physiotherapist, that didn't work for me but might work for you.

I would love it if you left comments below telling me about your experiences.

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