I don’t know what to say. I really feel for Fiona Smith, the 31-year-old ME sufferer who so sadly committed suicide recently; her parents, who must be feeling completely helpless and may be even thinking that they failed her in some way; all her family and the friends she had. So many people, doctors included, don’t know how to handle someone with ME and because quite often we don’t look ill when we manage to get out (makeup is a marvelous thing) and are SO often ill a bunch of grapes doesn’t really pass muster – it seems that some people don’t keep in touch just because they don’t know what to do or say.

Fiona may have had all the support in the world, I did; she may not even have been depressed, I don’t think I was. There were a lot of times when I thought I was going to die anyway, without the help of suicide, because I felt so ill and also times when I thought it would be a blessing because the pain was so bad. It didn’t cross my mind that I wanted ‘suicide’ I just wanted an end to the pain and exhaustion but because I had children I prayed and wished and hoped I would get better and the pain would go -  im sure if they hadn’t been in the equation my thoughts would have been different and I might have been praying, wishing and hoping for a way to end it all.

I love the phrase ‘Nothing lasts forever, good or bad’ (it got me through child-birth three times) because it gives me hope when things are at their worst (and I try not to think about it when things are at their best) because it got me through the really bad times and I now feel as if I have an amazing future ahead of me. I now feel as if ME was the path I was meant to be on because this illness has extracted most, if not all, the negative elements in my life and attracted positives into it

It’s been a while since I blogged but I have reasons for this:

a) I ended a physically and mentally abusive relationship which had made me very ill for a long time and it’s taken a while to get my strength/brain power back so I could work out what was going on.

b) I started to get some medical help and going to some classes all of which took a LOT of energy:

• Freedom and Beyond – a group for women (and men) who have been in abusive relationships – teaches you the traits of the abuser and how to spot them and gives immeasurable emotional support – ongoing
• Chronic Pain Clinic and FM pain management work shop – ongoing
• Counselling which helped me come to terms with the end of the relationship and supported me emotionally through police, courts, non molestation orders etc and diagnosed me with Post Traumatic Stress Disorder (PTSD) – ended
• PTSD counselling – ongoing

c) I didn’t know what to say … I tried hard to pretend everything was ok/would be ok and it was difficult to read some of the things I’d written in my blog about how great my husband was when the truth was – he was great at times but the great times were the pretend version he needed to show sometimes to maintain the relationship with me. I stayed because the great times were the best I ever had and I thought the bad times would get less and less and disappear because my love could overcome any problems we had …..

One thing I have realised is that I need to try to keep these blog pieces to 300 words or less because people with ME don’t have the capacity to read my brain fogged ramblings!

Ive just got my blog back online again after months of problems with servers and hackers. Ready to start writing again but my life has once again changed beyond belief (my belief anyway) so it might be difficult to explain – please bear with me. See you soon

PART 2

I’ve racked my brains about what I actually do to conserve my energy because I realised a few days ago that to get well has been almost like having a full time job for the last couple of months – making sure I have energy left for fun whilst also doing everything else that needs to be done – trying to make my illness impact on other peoples life as little as is humanly possible because I don’t want to be a burden.

Like most people who have a long term illness I don’t want anyone to have the burden of caring for me because I’m a very independent, self sufficient, proud girl and have never relied on anyone (partner, family member, friend) for anything. Then I realised that id do anything for anyone and that it made me feel good to help and wondered why id turned down help, and not asked for it, so many times when I desperately needed it. The only time I can remember asking for help was when I was 18 with 1 year old baby and I couldn’t cope. I had been on my own with him for 6 months. I hadn’t had a night out. I had no money. I just needed a break and I asked my mother-in-law to take him for a few days. She said ‘No, you had the baby. You’re its mother. You must deal with it’. She told me many years later she really regretted it and that she realised when she got to know me better how desperate I must have been to ask.  I was a strong person so being turned down when I asked for help really hurt my pride and made me feel like an idiot. I loved her and I guess I must have vowed never to let myself feel like that or open myself up and make myself vulnerable to anyone hurting me like that ever again. Maybe I also learned that I got through that time without any help so I knew I could survive anything life chucked at me.

Now, for the first time in my life I do feel that I have people who support me and who will help me if I ask. Primarily I’m talking about my lodger who will look out for me and offer help before I even realise I need. He offers to take me to doctors appointments, drops me off and picks me up when I go to meet friends. I have recently stopped being defensive and accepted his help when offered because I now can’t believe I used to say ‘No thanks I’m fine!’ then get ill. Even more recently I have started asking for help when I need it instead of doing something that I know will make me ill. Something in me has changed. Probably because of how broken I was mentally and physically by the mental and physical abuse I suffered at the hands of my ex husband some barriers broke down and I now also feel able to ask friends for help. My Dad came through for me amazingly when asked a few months ago – of course he always would have but was never asked.

When my ex visited for a weekend id just do what needed to be done, take tablets to cover up pain, use adrenaline to keep going because id know I had a couple of weeks to recover when he’d gone back. When he moved in I had to appear normal all the time – it’s not possible but living a normal day to day life with my ex had a really positive effect on my ME because its forced me to work out some new strategies  - I had to go to bed at a normal time and sleep whereas before I could let adrenaline keep me up till 3am then stay in bed, ill the next day. It takes a LOT of planning and care to stay well and not spiked up with adrenal energy. Having a fulltime relationship helped (forced) me to sort out things that I could let slide any longer.

So, new and old strategies – the things that are getting me through my day and saving me precious energy that can be used on more fun things.

The main thing which I do automatically, and have done for a year or so, is that if I can sit I don’t stand. In the old days I hated sitting down – even eating during the day would be done on the run while I did something else – working, driving, housework, talking on the phone ….. even up to a year ago I thought only old people sat down and would exhaust myself by standing.

I don’t walk up the stairs unless I have to.  I have found this to be one of the most exhausting things I can do and so even when I’m well I’m now very aware of actions that can take energy that I can’t afford to lose and so know to minimise them and care-take my body – I am always aware that once the energy has been used up its gone and the next step is exhaustion and pain. I guess I knew it subconsciously before but it’s much more helpful to be consciously aware. It’s all about knowing these things and doing them instinctively – mindfulness – being instinctively aware of how EVERY thing inside and outside my body is affecting me and instinctively protecting my energy and well being.

I wash up and don’t ever wipe – holding my arms up for that length of time takes too much energy especially heavy saucepans – even plates can be too much. Apparently this system is more hygienic so that’s a bonus!

Washing day – stripping a bed and turning a mattress and putting on clean sheets/pillow cases exhausts me so I try to do it in 2 or 3 moves. Take off dirty linen in the morning, wash immediately and hang out a couple of hours later. If I need to go upstairs to the loo I’ll turn the mattress if I feel up to it otherwise I do it, along with putting on clean linen, when I go to bed and fall in exhausted. Even the act of getting clean sheets out of the top of the airing cupboard and carrying them up stairs (3 floors and my room is at the top) takes a lot of energy and is too much to do straight after stripping the bed – it’s the arms above the head action again – I just can’t do it.

I haven’t ironed ANYTHING for about 4 or 5 years – just getting out the ironing board and iron would take too much energy away from me but even if that was already done just the standing and then lifting the iron could be tolerated for one or two items but then I’d be useless for the rest of the day. I’ve developed a washing system that means things no longer need to be ironed. Don’t set machine to spin too hard – 800 is good and 1000 max. Clothes are wetter and take marginally longer to dry but they are hanging there on their own with no extra energy taken from you so it doesn’t really matter. My machine has a button for ‘reduced ironing’ which turns the drum backwards and forwards for a couple of minutes after the final spin which loosens the clothes from the drum and knocks out most of the creases. I then take the washing out of the machine and fold clothes flat and leave them for an hour (if possible) before hanging out. I peg out so that clothes hang from the top down – the hanging weight de-creases them (except t-shirts which I hang by seams and fold the hem over the line so you get no crease line from the washing line (takes a lot of line room but NO IRONING yay!). The few creases that are sometimes left in t-shirts fall out after a few minutes body heat – the same for shirts and jeans anything else doesn’t seem to have creases in any more.

Showering and washing my hair – showering has to be done quickly and efficiently because standing for too long using my arms to wash takes a lot of energy. Washing my hair in the shower has to be thought about. It’s very long and thick and needs conditioning. Holding my arms up for the amount of time it takes to rinse shampoo and then conditioner out thoroughly is too much if I have a busy day or night ahead. I always plan to wash my hair the day before going out and always have a style, whether straight or permed, that looks great without any messing around (rollers, hairdryers, straighteners) as these are all things that call for my arms to be above my head.

Hoovering – I can hoover perfectly well but I can’t carry the hoover (kept on middle floor where most of the carpets are) up or down stairs. Well that’s not strictly true …. I can but because of the amount of energy it takes just walking up stairs when its combined with carrying a heavy object it’s too much and I have to then leave the hoover where it is for a couple of hours (it used to be for a day so things have really moved on) and come back to it later. I now sweep the floor boards downstairs as sweeping is fine done slowly and gently.

Cooking – using a tin opener and peeling veg takes a lot of energy and are the same type of action because you are using strength to hold the tin/carrot/potato with one hand and using force to open tin/hold knife/peeler and energy to keep the motion going – I find it almost impossible to peel carrots and potato’s for Sunday lunch without feeling exhausted so now I very very rarely peel potato’s we all love mash, boiled and roast potato with skins on. I can’t mash either but that’s fine coz when you do it with skins on if you quickly and roughly mash and add a dollop of Mayonnaise it’s the nicest mash I ever ate!

Watching TV – barmy as this sounds it can be quite exhausting. I find that after watching TV for 5 minutes if I don’t support my head on cushions, even though I’m relaxing, it’s too much. I guess if you are laying back with feet out and your head, neck and everything else is supported then the muscles in your body are relaxing properly but if you are trying to hold your head up everything is still braced.

Anyone with ME reading this will know the feeling of being so tired that even sitting is too much for you – you don’t know what to do with your arms, legs, head, feet so my whole aim now is to never get to that stage. It might not be possible but if I aim for never I might have fewer times when this happens.

If you have ME or another long term illness it would be great to hear from you about what you do or how you manage. Please comment below I can use all the help I can get!

PART 1

In the days before I found out it was adrenaline that kept me going I really was the epitome of the party girl and could keep playing longer and harder than most of my friends, who were averagely 10 years younger than me – we had some fun!! Of course I hardly slept because the adrenaline would take days to leave my body so I’d always be up for it the next day when everyone else was flagging – luckily age was on their side so the weekends were full.

I was the one who organised most of the nights out – the social secretary – finding out who was free and sorting out meeting times and places.  I loved a spontaneous party round at my house with the girls then into town for the usual drink and onto a club/clubs to dance. Meeting up for breakfast on the beach the next day was a glorious end to the night before where all the pieces got put back together again. I did this Friday, Saturday and Sunday in my old life – work hard, live hard, party hard. There were warning signs even then. I remember times during this when if I got cold I would feel so ill I had to go home because I thought I had flu coming (still it never came to anything ha ha).  Being able to stay wide awake until 6 or 7 am became a little wearing (probably for my husband to be) but even for myself – the one time it really had any benefit was the night/morning I was sitting on a bench by the harbour chatting away with my lovely friend Heidi when a yacht, with some friends on it, moored up in front of us to wait a couple of hours for the 8am bridge – we hopped on had another drink and I sailed it under the bridge when it went up – another tick for the bucket list.

These days my lifestyle has changed, depending on whether I’m in remission or relapse, sometimes drastically, sometimes noticeably and sometimes not at all. Of course a lot of this is age and finance related and not all down to ME but I started this post because I wanted to make a physical note of how I manage my day differently to the old days and what I do to conserve energy to stop the adrenal spikes and exhaustion from kicking in and to stay working towards remission which I feel pretty close to (Sept 2012). The goal being to just get on with the day, take everything in my stride and have enough energy to party again just as hard for one night only when finances allow. I mean ….. isn’t that what most of us work for – being able to have a blow out at the end of the week doing whatever winds us down. For me at the moment my full time job is managing my energy levels and getting myself out of relapse and firmly into remission and I’m very lucky to have a way of life that means that can happen.

Energy management can have the effect of making ‘one’ seem like a complete control freak. I, and other people I have talked to with ME or long term illness, don’t handle changes, or surprises, at short notice very well. The brain uses a LOT of energy and surprises (which can create an adrenaline spike which creates the fight or flight feeling which causes mini panic attack/anxiety which causes stress which causes brain-fog take a lot of time to work out – do I have enough energy, do I have time to save some energy, I need to plan how to handle whatever it is as normally as possible so that my ME has as little impact on my family or friends as possible. As long as I know all the details and don’t have to think/worry I’m fine because my brain doesn’t have to go into overdrive (exhaust itself and me) working things out. If I have a couple of days notice and all the details are there my brain works gently and quietly away in the background – no problem.

It’s really frustrating (and sometimes quite upsetting) for me that under duress I can’t get things right/straight in my head when a few years ago I could cook 5 courses for 12 people (whilst simultaneously handling work problems, welcoming and entertaining guests, sorting out squabbling children and drinking) and have everything timed to perfection and a house full of happy people.  A recent example of just working out how to get chilli cooked, rice fluffy and garlic bread crisp and all on the table hot and at the same time as a microwave meal for someone who couldn’t eat chilli seemed like WW III to me and I actually needed to sit down and ask someone to talk it through with me so that I could work it out – how crazy is that?? All because it was short notice and I didn’t know what time people were coming and who wanted to eat/leave when – the challenge would have added pleasure to the proceedings a few years ago. It’s simple though because once I’d realised this and let my family and friends know that I just need details and a few days notice everything can be (appear) normal!

Since moving towards remission ALL the problems I have around the house and the adaptations I have had to make are for tasks where energy is being used in the biggest muscles in my body – triceps/biceps/quadriceps – basically the tops of my legs and tops of arms. Actions where they are used gently but no exertion is necessary aren’t anywhere near so damaging – the best example I can think of is riding a bike – I’m ok to gently cycle along a flat road for miles (of course there are times I couldn’t contemplate this and even when I’m ‘well’ this tires me out more than normal eventually but it’s not instant like riding up hill is and energy is being eeked out gently rather than used up all at once) but as soon as pressure is needed to go up hill it exhausts me almost instantly.  Walking up hill is not too good either but feels like it takes a tenth of the energy cycling does so whoever I’m out with will walk my bike up with theirs. Being in remission will hopefully mean I can walk my own bike up the hill for a while and I’m really hoping that one day I’ll be able to ride it up again but at the moment that thought is a bit scary because I know that doing something daft like that can knock me over again and put me right back.

Over the years I have formulated energy saving ‘tricks’ (for want of a better word) that helped me to get things done that can’t be left when you are a single parent with two young children. As a single parent it’s all down to you there’s no one to pick up the slack when you can’t do what’s necessary. I could never iron for some reason that always exhausted me and that would be left for months until a rainy Sunday came along when there was nothing else to do and id spend the afternoon doing it while watching old movies on TV. Eventually I just managed to find a ways of ironing less and less things and its now 4 or 5 years since I ironed anything – and I don’t just wear creased clothes!!

In Part 2 of this blog piece I’ve detailed what household chores exhaust me and how I’ve tried to get round the problem – if you have ME or another long term illness it would be great to hear from you about what you do or how you manage – you may not even realise that you have ‘tricks’ because you’ve been doing them so long – I didn’t realise I never ironed until I had friends who stayed for quite a bit longer than a weekend  and who, quite normally, ironed everything.

Ive decided to do my second Master Cleanse – otherwise known as The Lemonade Diet. My reasons for this are:

Last time i did it the cleanse I lost a lot of my ME symptoms. I concluded that food must have a lot to do with causing some of my symptoms and although i try very hard to eliminate harmful foodstuffs its really really hard to get them all out of your diet and even when you think you have they slip in somewhere unnoticed and cause the problems and it takes ages to work out what it is you are eating that is making them reoccur. This way (I hope) i can start to reintroduce food stuffs to a totally cleansed system and and adverse affects should show up pretty instantly – it will be obvious what I’ve eaten that caused the symptom.

Last time i did it (November 2011) i lost about a stone in weight – guess only as i didn’t have scales and wasn’t really sure what weight i was when i started. I’m interested in losing some weight and very interested to see how much weight loss is possible doing this cleanse.

I have joined a group on the internet http://themastercleanse.org/ for those of you who are interested in finding out more, and one of the things they like you to do is to write 100 words each day in 5 categories as a diary of what is happening to you, how you are feeling etc.

The categories are: The Lemonade Diet Process, Detox and Salt Water Flush, Psychological and Emotional, Weight Loss – Physical Results and Support from Family and Friends.

I will try very hard to keep this diary up to date so that i have a record of what happens to me throughout the process and will try to remember to post my results up here as well.

I haven’t been able to write anything for months because i was trying to work out what happened and didnt know where to start. I was in a lovely big fluffy cloud. Somehow id conned myself in almost every aspect of my personal life. Its strange but alcohol gave me the answer (not because i was using it to cover up anything) it was all due to an (another) ME symptom that i didn’t yet know about.

There were things that didn’t add up. Firstly … i hadn’t had a drink for months (because ME makes me hyper sensitive to so many things and alcohol is one of them) then suddenly i was drinking as much as i liked and never got drunk and no hang overs (what am i complaining about!). My new man thought he’d met a goddess – not just for this reason (obviously!) …. but he thought it was great that a ‘girl’ could match him drink for drink and never get drunk no matter how much he fed me (and i was vigorously tested i can tell you!). I felt really proud (proud!?!) that i could handle it for a few days then after a few weeks i started to think there must be something wrong but what on earth could it be??? Apart from the damage it must be doing to my liver  it wasn’t the kind of lifestyle id ever wanted. There was no possible reason why my de-sensitisation (is that a word) to alcohol should indicate a problem … was there?

Things changed dramatically at exactly the same time as i started to drink one drink and feel drunk again. I went on holiday with some very lovely girlfriends and I’m going to quote the part of the post i wrote that started to ring bells for me ……  “Alcohol seemed to have a much greater affect on me than when I’m at home.”  About 3 months after i wrote that sentence i re read it and thought that it was a weird thing to say and so i started to investigate. Investigations didn’t take long to be completed because i asked Michelle (my Occupational Therapist) on her next visit a few days later and she reminded me that i had been in a very stressful time (my ex of 7 years having just left me and then starting a relationship with a new guy which was really full on from the first second of meeting without having a chance to get over the last relationship … plus everything else that was going on).  Michelle told me that stress causes me to have adrenaline spikes – the higher the stress the more adrenaline was sent into my body and it was the adrenaline that was almost definitely stopping me from getting drunk (or realising that i hadnt thought through anything properly. In hindsight i can see that as soon as i was away from home (on holiday), and the new relationship, i destressed (so the adrenaline spikes stopped) and so a glass of wine or one Mojito started to have its usual affect on me and i could once again get quite tipsy on one drink. I realised a lot of things on that holiday and knew i had to change things drastically when i got home. Little did i realise just how drastically things were going to change without me doing a thing! Id really like to know the medical explanation of why you cant get drunk sometimes so if anyone reading this knows why adrenaline stops you getting drunk please comment below.

I got married on the 13th of October 2011 (Jons birthday) and its a long complicated story (you wouldn’t expect anything less from me surely) but the short version is …… because of a few coincidences and acts of fate i picked up the phone to Jon, thinking i was answering it to my son, and as soon as i realised who it was everything changed for me and i started to wonder if i had made a mistake and if i WAS really over him. He’d come to the same conclusion and had made some personal vows and started to talk to a relationship counsellor and convinced me that he loved me, wanted to spend his life with me …. so that’s what we are doing. Just normal. Calm sometimes, fraught sometimes, stressy sometimes, extremely funny and chilled lots of times, loads of love and laughter and ups and downs but its real and I’m not living on a fluffy cloud any more.

I’ll write a bit more in a couple of days but i was urged into restarting my blog by my good friend Karin and so i felt if i could just get the first words out then maybe it would be OK – feel the fear and do it anyway … i couldn’t do it before because i didn’t know how to explain what happened and, after all the things id said in my last couple of posts, be able to make it sound believable. It happened, it felt real at the time and here i am.

It seems the big fluffy cloud i was living on might have been cloud cuckoo land.

Update: 30 March 2013 – I asked Jon to leave on 14th October 2012 – its seems i moved from cloud cuckoo land to a very dangerous place but in the long run its been a massive positive because i have learned so much more about the reasons for going into relapse etc and about myself that its all been worth it.

Inspired by Chris B on http://cfsknowledgecenter.ning.com/

I really liked what you said about finally having time to focus on our wellbeing – its really how everyone should be running their life. Maybe, just by being (and staying) positive people around us will notice and we can change the world around us in a small way by giving family and friends the courage to do it too? Thats going to be my focus. Ive writen a list of 101 things to do in 1001 days, some of them are practical but mostly they are fun and as i dont want to lecture anyone on focusing on wellbeing i guess i kind of hope that someone will notice that conserving energy is my main job (at the moment) but that outside of that i am doing lots of amazing things. Im cured of watching TV in the evening – when all youve had for months is the TV to stiumlate you its the last thing you want which leaves me loads of time to do things that give me a life force thats the TV seeps away. In fact youve now inspired me to write a peice for my blog. Stay well, Sally