The stigma of an invisible illness

I've had another really rubbish couple of days. My IBS has been horrendous, has wiped every bit of energy I have and the pain has been almost unbearable. It hasn't been this bad since I first started getting ill and I had to stay off wheat and dairy for nearly a year. This is something I really don't want to have to do so I'm hoping it will settle down again on it's own with my new tablets. I'm still really achy and sore from sorting out my classroom on Friday but *touch wood* my other pain has settled slightly in the last couple of days. I had a whole day without codeine yesterday which is quite a big deal for me.

This brings me onto the social stigma against taking medication. I feel frustrated that so many people do not understand what it is like to have to take medication just to feel human and be able to get out of bed and have a normal/semi-normal day. This hasn't been directly aimed at me though I do feel people don't understand but I have seen a lot on the internet - particularly on Instagram where I follow a lot of people with the same illness as myself. I am fully aware that I am actually one of the mild cases compared to others and am extremely lucky that I am able to work. Some are completely bed bound and require help with everything we would take for granted. However, even these people are criticised for taking "too many painkillers" and "not being active enough". It hurts and is frustrating as this is not the life anyone would choose. I do not enjoy spending most of my summer holidays drugged up on codeine and laying in bed around 70% of the day. It is NOT a 'Sleeping Beauty' illness that people have in their mind where we enjoy sleeping and resting. The reality is that everyday hurts, resting is essential after any physical exertion such as food shopping (which most people would not see as physical exertion). The constant headaches, nausea, lack of temperature control and dizziness make any simple task much harder than it should be.

If a person has diabetes or another illness similar, they would not be told to stop their medication. So why should it be different because I have an illness that people can't see? Everything I take benefits me. I take the anti-depressents because they help me sleep - which it vital. I take vitamin D because my body is deficient. I now take mebeverine to stop my stomach spasming. I take iron and vitamin B because it helps give me more energy. I take ibuprofen when my body is stiff and it hurts to walk down the stairs. I take codeine because it is the only thing that dulls the pain enough to allow me to live a normal life. And finally, I now have to wear compression socks to aid my circulation and stop my blood rushing to my feet. No, it isn't ideal and it isn't what I want. But at this moment in time, it's all I am able to do and it suits me just fine.

One of the hardest things about CFS/ME and fibromyalgia is that they are completely invisible. From the outside, I look like a normal, healthy 23 year old. No one, apart from my family and Adam, has seen me at my worst and they don't see the pain I endure on a daily basis. They see me on my good days where I'm doing normal things. I respect that it must be hard for others to understand but I just want people to try.

This is NOT how I want to start my day but it is better than giving up.

I have tried graded exercise therapy, didn't work. I have tried ignoring the pain, didn't work. I have tried heat pads on my limbs, cold pads on my head, didn't work. I am not at a loss though, codeine helps. So I will stick with it. I often feel like I'm being told off for not trying anymore. I am. Every day is a constant struggle and I know I am winning. I could let it take over but I don't. I stay as positive as I can but emotions get the better of me at times. I'm tired of being embarrassed when I have to turn down plans because I won't have the recovery time, I'm tired of popping pills in front of people because the pain is so bad, I'm tired of people questioning why I'm wearing a wrist support, I'm tired of explaining to people why I go to bed at 9. But more than anything, I'm just tired of being tired. No matter how much sleep I get, with CFS and fibromyalgia, I'm always going to be tired - tired to the point that I cannot function which is hard for most people to understand.

Things aren't all negative though. Since starting this blog, I have had so much support from people and I am so grateful. Many have offered advice, shared their own stories or just congratulated me for raising awareness. I feel some people may get bored of my constant posts, but my illness is a big part of my life so while everyone else may be posting pictures of their nights out, I post about my days in bed!

On a much more positive note. I'm going back to work tomorrow! I don't know where the last 6 weeks have gone but I'm ready to go back. Having a routine benefits me health-wise and I know my body will hate for the first couple of weeks, I'm sure I'll settle back in quickly. I'd be lying if I said I wasn't nervous. I'm not sure how I will feel and obviously at work I can't take myself off to bed and lie down! But I've done this for a whole year now and I know I can do it. I'm excited to be back in the classroom with my little lovelies and their little faces always keep me going.

Apologies for the rant, it has to happen every now and then! xxxx

Onwards and upwards

After my meltdown on Wednesday I've been feeling loads better!

I spent all day yesterday making resources for my classroom (and having plenty of rest) which definitely helped me. I was still in pain but the painkillers dulled it and it did me good to have a day where I could just sit down all day. Obviously this isn't ideal if I want to get some strength back in my legs but it helps with the rest of my symptoms. I had a clean up in the house as well which always puts me in a good mood.

I had hoped to go swimming in the evening but by the time it got to the right time, my back was agony and all I wanted to do was sleep. So I made sure I had a nice early night and set my alarm for 7 so I could go before I went into school. I had so much to do in my classroom and I haven't actually managed to get it all done, but it's just the last bits that can be done on Thursday before the children come back. I had an average sleep, took me a while to fall asleep then I was wide awake at 4. I watched the Goofy Movie for a bit (my new falling asleep film) and finally drifted back off. This made the alarm a bit more painful but I was determined to start my day with a swim. I was in a fair bit of pain when I got up but I try not to take painkillers if I'm going to be doing something active. If I'm fully aware of my pain then it's less likely that I will overdo it and hurt myself. I was pretty proud of myself and got my 40 lengths in which I hoped I would. My membership at the leisure centre includes 'SwimTag'; you wear a wristband which tracks your stroke, lengths, pace, calories burnt etc. I find this really helpful and can always see the difference between my good and bad days.

Today's swim. 

I went straight from the pool to work and spent the next 5 and a half hours changing the paper on the displays, stapling things on the wall and tidying. It's still not exactly how I would like it, but it's definitely getting there!

Some pictures of my classroom. 

On my way home I had a lovely long chat with my mum. I do miss seeing her all the time but we still have regular catch up's! When I got in, my compression socks had arrived so I am wearing them now to get used to them. They are very comfortable and fit perfectly so I'm hoping I will start to see the difference. It's frustrating that I've had my diagnosis for nearly a year and have questioned the dizziness and it's only mentioned now that it is common in CFS to have poor circulation. When I stand, the blood rushes down and the socks are supposed to encourage the blood back to my heart and help me feel better and less weak. Fingers crossed they help me stay on my feet for longer.

My very attractive compression socks. 

I've had a cup of tea, slice of banoffee pie and am now having a much needed rest while watching Pretty Little Liars. I've had a busy couple of days getting things ready for school and I want a weekend where I don't have to worry about it. I can't believe how quickly the summer holidays have gone. I'm excited to go back and nervous!

I just have a few more bits to do for school and then I can get into bed. I'm going to try and get up relatively early the next couple of days to get my body back into a routine of getting up early and living on less sleep.

As well as feeling a bit better physically, I'm back to my usual happy self again. I know it's okay to have a bad day and feel angry and upset about my health but it's important to stay positive. I know I can get through my bad days and I know I have the support of my friends and family. I often feel guilty that Adam gets the brunt of it most of the time. He sits with me when I'm feeling sad, lays next to me when I want to spend the afternoon in bed and brings me what I need when I don't have the energy to move. I'm sure he didn't expect when we got together that it would be like being with an old lady, but he never complains. I'm so grateful for everything he does for me and when I'm having a good day like today I can really see it! <3 xxxx

My LOVELY new doctor

I've had an emotional day today. Such mixed emotions involved.

I woke up feeling absolutely horrendous, I've been really suffering with my IBS at the moment and had stomach pains which kept me awake pretty much all night. So obviously I woke up exhausted and was still in a lot of pain. I needed to book an appointment with the doctor this week anyway to discuss some things and get acquainted with the doctors in Norwich. Being in so much pain I figured today would be the perfect opportunity. I went in with my usual list written down of things I wanted to discuss. I was a bit apprehensive as usually every question and concern I have is dismissed and doctors openly admit they know little about my condition. I knew that there were GP's at this surgery who specialise in CFS so was hoping I would see one of these.

The appointment was probably my most successful so far since my diagnosis. I explained I had CFS/ME and the doctor was really understanding and kind about it. She started discussing my symptoms with me and answered a lot of questions I had. I asked if my dizziness when I was on my feet was normal, which she said it was, however, has advised I started wearing compression socks during the day, which have been ordered and should be here by the weekend. This will help with my circulation and hopefully help me become a bit more active - or at least not feel like I'm about to keel over 24/7. She also prescribed me some tablets for my tummy which have already started to help. My IBS gets worse at times of stress and going back to work obviously is worrying me.

The doctor also suggested I get my bloods re-done which haven't been done in about a year just to make sure there are no other underlying reasons as to why I get so dizzy and weak. This probably won't be for a couple of weeks now but at least it has been mentioned. Once I had finished at the doctors and feeling much happier that I finally had a doctor with good knowledge of what I'm going through, I then got to go and see the flat for the first time! I loved it and it's made me even more excited to move in.

I then had a bit of a meltdown. We had walked to and from the flat, and my usual dizziness, nausea, lack of temperature control, plus the exhaustion, stomach pain and all my usual pain just got on top of me. I threw a strop when I knew we had to leave the house and ended up getting myself in a state and crying. It all gets a bit much sometimes that the simplest of things can leave me feeling so ill. I had a lovely weekend with my friend and was feeling better than usual. Until today. It gets very frustrating that I don't know if/when it will get better. I try and stay so positive but everyone is entitled to a bad day! I get angry that my body can be so useless and can't cope with usual everyday things anymore but there is no point dwelling on this as it's not something I can change.

Once I'd snapped out of this mood, I powered on. We got ready to leave the house and I took my prescription into the pharmacy. The pharmacist was lovely and helped me sort out paying a £10 direct debit a month to cover my prescriptions which will save me a lot of money since I now need around 3 prescriptions a month. I was impressed as no pharmacist has mentioned this to me before and it made me feel even better about being in Norwich. The doctors and the pharmacist were nicer and more helpful here than my doctors at home. This also helped greatly with my mood. We went to Adam's mum's house and then came home to a tax rebate! So obviously I got dragged into town and bought GBK which was heaven.

I am now resting up and watching Pretty Little Liars before me and Adam are going to make - or attempt to make - a banoffee pie, my absolute favourite dessert.

My pain is still high but it's easier to deal with when my mood is better. I've taken my painkillers which haven't really done anything but my stomach is 10x better than this morning. I'm hoping that tomorrow will be better than today as I really need to get prepared for going back to work.

Wish me luck with the banoffee pie!
xxxx

2 years ...

Morning all :)

I am off to Bournemouth in a little while for my friend's birthday, I'm very excited but also a little bit nervous. I find it sad that every time I'm going somewhere away from home, I feel a bit nervous and anxious about how I'm going to feel. Questions always run through my head, what if the pain gets unbearable? What if I need a nap? What if we go somewhere where there is a lot of walking involved? Obviously this is something I never had to worry about before I got ill. I won't let my illness hold me back though. I'm not going to feel any worse away than I will at home (I hope) and I know what I have to do if I do have a flare up of symptoms. My friends are understanding and I'm staying with a family I feel comfortable with so I can't see there being a problem!

So far today I am feeling fairly good. I had a long sleep to prepare myself for the 4 hour drive and am feeling pretty well rested for a change. We'll see how long that lasts once I get onto the motorway! I can feel the pain in my arms already building up but I'll make sure my painkillers are within easy reach in the car. I was meant to leave at 10, its now 10 past 11 and haven't even packed yet but I don't want to rush and stress myself out as this is when I start to feel worse.

We are going to an inflatable water park on a lake tomorrow which I can't wait for! I'm sure my body will hate it but I know my limitations so I'll be as careful as I can. I know it will be worth it anyway. We're then going for a meal for Emma's 21st before I have the long drive home on Monday. I'm so happy I am managing to get in my annual weekend away to the New Forest to Emma's, it wouldn't be summer without it! The holidays is the only time I can plan these weekends away as I need the recovery time afterwards.

This picture came up on my TimeHop this morning...

This is when I was taken ill on holiday this time 2 years ago. This is when my health problems seemed to start. After this, I felt quite tired for a long time though this did improve slightly. I also started having lots of problems with my stomach which kept getting dismissed as IBS. I spent a year off wheat and dairy and my stomach made a bit of an improvement but I then began to feel very tired again. I knew something was wrong but the doctors dismissed it all. There is more about this in my first blog post 'Diagnosis'. Up until last summer, I was able to do everything I could before but just felt more tired and achy. Now I'm much more limited but the aches are now full blown pain. It's sad to think I might still be completely healthy if this hadn't have happened on holiday but without proof this is the trigger, it is hard to tell. 

I still wouldn't change anything and am happy (most of the time) :) 

Need to go and pack now for my weekend! Hope you all have a good one xxxx

My mum - the survivor

I decided to do a slightly different post today which isn't really about me at all. This one is about my lovely mum, the strongest and most inspirational person I know.

In May, after her first routine mammogram, my mum was called back in for a biopsy. This was terrifying for her and was completely unexpected. We all had a bad feeling that it would be the 'Big C', but hoped that it had been caught early. Turned out, luckily it had. It was cancer but the doctors had extremely high hopes that it would be cured. She had the operation two weeks later to have the lump removed and then started the healing process. My mum is a fighter and never complained. After check ups, she was allowed back to work and booked in for 3 weeks of radiotherapy in the summer holidays. They managed to get in a week holiday on a cruise for some relaxation before the treatment started.

She was given the all clear and the treatment finished yesterday. I can count on one hand the amount of times mum has let it upset her, she always remains so positive and strong for everyone else.

The past few years have been so hard for our family, after a long battle with alcoholism, we lost my dad in 2012. Mum has always looked after us, made sure we had a roof over our heads and ensured we all had the opportunities to follow our dreams. I would not be where I am today without her.

She has been my rock through my illness, always looking out for me, making sure I am okay. Even when I was home to take her to her radiotherapy appointments, she still made sure I had everything I needed on the days I could hardly get out of bed.

There are not enough words to express how grateful I am for everything my mum does for me and life sends some cruel tests sometimes. Our family always comes out fighting and we always will.

Now the cancer is gone, my mum can focus on her new engagement and baby grandchild on the way (my brother's, not mine!). The good always makes up for the bad and our family is happier and stronger than ever!

#cancersucks

Home Sweet Home

I'm home! Which sucks.

We got back yesterday morning about 4am, which obviously wiped me out. I'm still absolutely exhausted and I think it will take me a couple of days to recover. It's so nice to be able to sleep properly after barely sleeping in Spain due to the heat. Ceiling fans are useless in 30+ degrees.

Despite not sleeping, I had the loveliest week and best holiday I could have asked for. It was so chilled out and exactly what I needed. The first few days I felt pretty good, much better than I had in weeks but unfortunately that didn't last. We managed a night out on the Wednesday in Marbella which was so good, of course, alcohol got the better of me and I made the mistake of drinking vodka. But I had an absolute blast so it was worth the hangover the next day - even if we did spend the whole day asleep until 6pm.

Before the night out in Marbs!

I don't know whether it was the night out that affected me or the lack of sleep in general, but the pain then got much worse for the last few days of the holiday. I tried to avoid taking my painkillers as I don't want to become dependent on them but I had to give in. On Friday we spent the day at the beach in San Pedro which was perfect. The weather was lovely with a nice breeze which made the sea really rough. This was so much fun and we swam out and bobbed around in the waves. When we got out, I had a bit of a nightmare and had a cruel reality check of how weak my legs have become. I was sat down in the sea and couldn't physically shift my weight onto my legs to stand up. Adam had to lift me up and I was in quite a lot of pain after this.

The beautiful beach.

The next day I was feeling pretty miserable, it all gets a bit much sometimes; the constant pain, feeling like I'm going to fall asleep at any second, feeling like it's too much effort to even hold my head up and not knowing if/when it is going to get better. It's frustrating that every time I do anything with any walking involved, I panic about how I'm going to feel. Anything longer than about 10 minutes, I get dizzy, hot and feel sick but I just pace myself and accept my limitations.

Luckily, the flight home was a lot less stressful, it was smooth so I didn't feel anywhere near as awful as on the way out and slept for the majority of it. I then slept most of the car journey home and was asleep within seconds of my head hitting the pillow when we got in. I slept for a decent amount of time but still felt like death. We popped into town and that finished me off! I felt weak and exhausted so I went for a two hour nap. When I say I need a 'rest', I think people don't understand what I mean. I don't need a sit down, I need a full blown lay down in the dark where I can sleep if I need to. Adam came and woke me up with an Irish Creme Latte and my favourite biscuits and loaded my iPad up with Pretty Little Liars so that we could go food shopping.

My wake up call from my lovely boyfriend.

I plan on having a lot of rest today watching Pretty Little Liars and am going to a register with a doctor to hopefully get put on the waiting list for the CFS/ME clinic in Norwich. They have GP's who specialise in it so will hopefully be much better than the useless GP's at home.

Writing this has worn me out, so I'm getting back into bed.
Goodnight :) xxxx

Hola from Spain

Hola!

Arrived safely in Spain at about midnight on Saturday night. Typical that I would have a massive flare up of symptoms before we left for the airport, from my body temperature being too high, to the pain in my limbs and the IBS picked a great time to make a reappearance. Obviously this made me nervous for the flight which probably made me worse and the actual flight was one of the most painful experiences of my life, my back and legs were absolutely unbearable. The painkillers did not even touch it but I kept myself busy reading magazines and me and Adam spent time attempting the ‘expert’ sudoku’s. 

The flight was pretty turbulent and the seatbelt signs were on most of the flight so it’s not like I could even get up and have a stretch which might have soothed the pain a bit. I used to love flying but the older I get I am absolutely terrified during turbulence - Adam was an absolute angel and let me cling to him the whole time. My symptoms are much worse if I get stressed out so this is probably why it was so excruciating. But we made it! The flight was much quicker than they said and we got through the other end with no problems, picked up our little Fiat 500 and were on our way to the villa!

It wasn't far in the car and I’d started to feel a bit better after being back on solid ground, we arrived and the heat was HOT. Can’t complain! We set down the cases, quickly got changed, removed the dead lizard from the bedroom (obviously I didn’t) and set off to buy some bottled water, aka, to the pub. It seemed silly not to have our first holiday beer while we were there, and we were up til about 2/2:30 which is so unlike me! Considering I had been up since half 6 that morning, it was a proud moment. 

I can never sleep properly the first night of holiday, different bed, different heat and body clock a bit messed up so I wasn’t surprised when we woke up at about half 8, but up we got and set off for breakfast. It was a bit cloudy and tried to rain, but it’s lovely and hot and Adam is already resembling a lobster and I am sporting some stylish sunglasses tan lines. 

We had a lovely chilled day, exploring the pool area, beach, restaurants and just enjoying doing nothing in the sun. We have the laptop with us so we’ve had some rest time watching a film which is good - Adam actually needed more rest than me today!

Enjoying a beer with lunch.

We had a nap and headed out for dinner quite late, about half 9, then went for a cocktail before falling into a much needed sleep - for about an hour, then I spent the night tossing and turning in the heat again! Typical they’ve said these are the hottest nights for about 20 years…

Out for dinner.

I felt loads better yesterday and my symptoms are back to mild. Therefore I have come to the conclusion that I should move abroad and just be on holiday all year round. 

xxxx

Adios amigos!

Today I've been spending the day getting my washing done and packing for holiday! We are off to Adam's family's Villa in Marbella and I'm so excited that it's finally here. The weather looks perfect and I've got a few books to just sit and do nothing (even though that's all I've done for two weeks but it's more exciting in a foreign country!)

I'm still nervous about walking around the airport as I'm still not great at walking any distance (especially pulling a suitcase!) but hopefully the excitement will keep me going. Being cramped in those tiny seats is a bit concerning as well, last time I went on a plane I was a bit healthier than I am now but we will see! I'm sure I'll be very stiff afterwards but hopefully no worse pain-wise.

Luckily I've been feeling loads better the last couple of days, only needing one lot of painkillers to see me through the day and have been keeping up with the swimming. The last two days I did 65 lengths, then 64 which is the most I've done since getting ill so obviously I was VERY happy with myself :) I even went for a little walk to Tesco earlier, it's only about 4 minutes away but every little helps! On the days when the pain isn't stopping me walking, it's my inability to control my body temperature. 4 minute walk and I was hot, sweating and so dizzy I needed to sit straight back down. I seem to be much better when walking inside? Which is weird and I don't understand it, but fills me with a bit of hope that I'll be okay in the airport.

I can't wait to finally get some sun, our summer this year was cut a bit short after our week-long heatwave. Also it will help boost my low vitamin D levels even more. I'm making sure I'm fully prepared for any symptom that might flare up while I'm away but I am hoping the rest and relaxation will keep the pain levels at bay and I won't need the strong painkillers. I can't drink on them and I want a holiday beer!

Fingers crossed I can really enjoy myself. I'm trying not to think too much about not feeling well as this stresses me out and makes me feel worse! I know I'll be fine in the day as we won't really be doing anything but I want to enjoy the evenings too, going for nice dinners and having some drinks.

We have our tickets printed, money exchanged and cases packed (nearly) so we are good to go!

Adios! xxxx

Just keep swimming!

Today has not been a great day! I felt pretty good when I woke up, wasn't in a lot of pain and actually felt like I'd had a good nights sleep for once. I can usually tell early on how I'm going to feel for the day but I wasn't prepared for how rubbish I feel now...

Firstly though, I am so grateful for the messages I am still getting from people who have seen my blog, mostly by my closest friends who offer their support but also from people I barely speak to and some I have never met! It's so lovely and really cheers me up on days like today.

Since I am not able to exercise much, a few weeks ago when I was feeling a bit better, I signed up to a leisure centre and started swimming. I've always enjoyed it and thought I would give it a try since it's much less strain on the joints etc. I then had to take two weeks off (one for not being well and another while I was at home), but I thought I would get back into it today since I woke up feeling pretty good.

BIG MISTAKE. I now am in a ridiculous amount of pain, feel sick, horrific headache and had a pretty long nap which did not help in the slightest. While I was actually swimming, I felt fairly ok, bit sore but that was to be expected. But while I was having a rest in the steam room (best part about the leisure centre!), my neck started to stiffen and I probably should have taken that as a sign that my body had had enough. I pushed through for another 15 minutes as I was determined to get my 40 lengths in but it seems now that I've massively overdone it.

I really want to carry on with it just as some form of exercise. I used to be so active, have always danced, then did cheerleading at uni and loved going for runs and to the gym. So it's hard not to be able to do these things and I also worry about putting on weight. So far I have been lucky and am still in my usual size 6-8's and can eat pretty much what I want, but I have noticed how much less toned I am, particularly my legs. It's horrible
 that there isn't all that much I can do about it, because even eating healthy isn't going to bring back the muscles I had. Most days I am still happy with my body, its just frustrating the days I'm not that I can't go for a run or something to make myself feel better.

Still keeping positive though and VERY excited for my holiday in 3 days!!

Here I am a few weeks ago feeling very proud of myself after my first swim!

I wish 'Zapain' would ZAP the pain!

I can't believe it's only 11:23 in the morning! I've been up since about 4:30. Every time I go back on Fluoxetine, I can't sleep for a few days while I wait for them to kick in. Very frustrating as when I haven't slept enough, I get more pain.

I didn't do a lot yesterday, took my mum to an appointment and then stopped in Outfit and got a new dress for holiday! 4 days to go and I'm sooo excited! A little bit nervous about the airport as its a bit more walking than I'm actually capable of at the moment, but starting tomorrow I'm hoping to go for a gentle swim to start building a little bit of stamina back up.

After that I played Sims for about 6 hours. My brother is decorating so we had no internet and I couldn't watch Pretty Little Liars - so upsetting. I took my new painkillers, Zapain, late afternoon and it took until bed time for them to actually touch the pain. The worst is the nerve pain in my arms, under my ribs and back. I can just about tolerate the muscles aches and joint pain but the nerve pain is ridiculous. Then restless leg syndrome decides to kick in at night which can be quite painful but mainly just annoying! In the morning, I had a bad back so I decided to use my Tens machine which I hadn't used for a while, which sends pulses to the nerves to re-direct the pain signals. It was working fine until a wasp flew into my face, I flinched and dropped the machine. Hopefully it does just need a new battery...

I've noticed the pain getting worse when I'm driving so need to keep an eye on that. Only on long journeys which I don't have to do very often any more luckily. I can't decide what's worse, my left arm from changing gear or my right arm from steering!

I drove back up to Norwich at 8 o'clock this morning as I couldn't sleep, we are giving in the paperwork for our new flat today which I can't wait to move in to. Feeling a bit rubbish, so will probably need a long nap this afternoon! When I got back there was this waiting for me in the bedroom so I'm in a good mood right now :)

The Spoon Theory

I had a really rubbish evening yesterday, I had the worst headache I've ever had that I just couldn't shift, which meant I was even more tired than usual and couldn't enjoy the family barbecue properly. I ate my burger and went to bed - luckily it was a good burger!

I did manage a picture with my brothers, though I look quite ill!

Anyway, I'm having a much better day today, have spent the day in bed but have been doing some knitting which I haven't done in a while (as I was saying before, I have new ways of having fun). AND on the plus side, my headache is gone!

I said the other day I would write about the spoon theory, which sums up my life really really well. So here goes....

Basically every day, we are given a certain amount of spoons. We use them to do every day things such as shower, work, socialise etc. but once they are have run out, all we can do is rest. A healthy person has an unlimited amount of spoons, so they can be spontaneous with their plans and do not have to worry so much about running out of energy. This is what I meant by needing to plan everything and have a routine. Some days I can do more than other days and usually this is because I have overdone it and 'borrowed' spoons from the next day.

This might not make much sense so I have written an example of my typical working day, imagining I have 12 spoons.

6:00 - get up and get ready for work (-1 spoon)
7:00-7:30 - drive to work (-1 spoon)
7:30-4:30 - work (-7 spoons)
4:30-5:15 - drive home (-1 spoons)
5:15-7:00pm - REST
7:00pm - make dinner/clear up/make lunch/shower (-2 spoons)
8:00pm onwards... RUN OUT OF SPOONS.

By 7:30/8:00pm on a usual day, I am out of spoons/energy and therefore do nothing apart from rest and sleep. Unfortunately we do not get spoons back just by resting.

Using this theory, it helps me to understand why I am only just recovering from my night out which was 9 days ago. I used probably nearly a weeks worth of spoons in one night. I don't regret it in the slightest as I had such a good night and it was fun acting my age again for once! Therefore, I've probably had 2/3 spoons to use each day, which have run out by lunchtime.

I don't mind having to plan my life this way, I like having routines and I'm getting used to knowing my limitations and how long things will take me to recover from. I hope this helps people understand that if I say no to plans, it's not because I don't want to come, it's simply because I don't have the recovery time.

I'm still keeping positive and enjoying my time off work! xxxx

I'm not 'boring' or 'lazy'

I decided to write a slightly less positive post today about how others react towards me now that I am 'different' from how I used to be.

Firstly though, I would like to say how grateful and overwhelmed I am from the support people have given me since starting this blog. I have had people I haven't spoken to in years messaging me with ideas, advice and even just to acknowledge they have seen the blog and wish me better. It's lovely to know how much people care.

However, onto the less positive. I am fully aware that people don't mean to be nasty or upset me and most of it is a lack of understanding. I suppose I am to blame for not telling people why I don't do the things I used to, but I don't think I should have to tell people if I don't want to. This is another reason for starting the blog, to make people aware that sometimes there is a lot more going on with people than first appears.

I used to be very active and loved nights out, so turning down days out and nights out is really hard, so obviously when I am then called 'boring', 'lazy', 'anti-social' etc, it does hurt. This is not a dig at people, it's just my way of explaining that it is hard to hear. I am not boring (I don't think), I just have fun in other ways now. It just all takes planning. I can go out for the day, but I need to know in advance. That is all. So asking me at the last minute if I want to go out and I haven't saved the energy, then unfortunately the answer will always be no.

With this illness, every person is completely different. There are things that I can do that others can't and vice versa. So comparing me to someone else with the same illness isn't going to make me suddenly be able to lift weights in the gym, for example. I physically can't.

Some people are bed-bound and have to give up everything, some can't work but can enjoy a healthy social life, I personally decided I would rather work as it gives me a good routine to stick to but this takes every ounce of energy I have and means that during term-time, my life is work and a social life doesn't exist. I love what I do though and I wouldn't change it for the world. This is also why teaching is perfect for me as I can through all my energy into working and then I have the holidays to relax.

I'm in a fair bit of pain today but the stronger painkillers I got yesterday are definitely helping.I'm going for coffee with my brothers soon - nice of them to invite me for a change! Then I plan to spend the rest of the day in bed watching more Pretty Little Liars (until my BBQ is ready).

I'm off for a rest now until I need to get ready xxxx