I am forty one years old. When I was twenty years old we had just got married, had brought a derelict house and we were running our own business. I would write great big lists and not allow myself to go to bed until everything was done. We worked six markets and had one day buying stock. Our days started at 3:30am and finished late.
I started to get really tired. Customers would be talking to me and I would have to hold my eyes open as I felt I was going to fall asleep on the spot. One day after travelling home from the market I went to get out of the van and I couldn’t move my legs! It took all my effort to speak. I felt so ill.
Matt got me to the doctors who said it was exhaustion – physical and mental exhaustion. He told me to rest. He did a few tests and visited after a few days.
I had no TV in my room or computer, no children and no phone upstairs. At first I thought the business would fail without me so I got worse but when I realised all was running just fine without me, I did relax and slept. Everyone – friends and family cooked and looked after me. I knew nothing of people being trapped like it for years, I just understood that I had worn myself out.
My doctor said you have Yuppie flu or ME – rest was the cure.
I realised I was trying to do the impossible and cut my working days down when I did return after three months of bed rest. I ate better and started to exercise daily and loved having that time for myself.
Fast forward to October of 2010 – I collapsed. I have never felt so awful. I had been to the doctors the week before, he had taken blood and actually contacted me the day I collapsed to say that my blood sugar was at 2.5 and I could be diabetic. Once again I could not talk, I slept and slept, I didn’t want to eat, and I couldn’t get to the toilet. After the doctor took another lot of blood and arranged heart checks because I couldn’t breath properly, I thought if I just rest as I did before I would repair and be back to work asap.
I read as best I could about ME – worse mistake ever!!!!
This time around I had two lovely daughters 15 and 11 , a lovely husband that had been suffering from extreme anxiety for the last two years over the threat of loosing our two strongest markets – so was battling to save them. We had opened a shop as well with staff.
My doctor said you have ME but you need to wait 6 months to be diagnosed so just rest!!! They would contact the ME specialist and I would just have to wait for an appointment.
The lead up to the crash where we had taken on the shop it had taken all my ‘me’ time away. The only time I could fit my run in was 4 in the morning which was fine at first but then as I ran all I did was feel guilty about what I should be doing instead!
Matt would come in from work and it would take me between 1 and 2 hours to talk him around and calm him down. He had a fear of illness and had had his blood pressure taken, because it was high he was convinced he was going to have a stroke. It had always been a family joke that he was a hypochondriac but as soon as he was stressed with work it would go into overdrive but this was the worst he had ever been. He would shut himself away and I could not reach him, he worried about everything, it was easier to just get on with everything and not bother him. He was going to the gym and had got into cycling so I encouraged him to go and do this as much as he wanted but I tried to hold everything together. Netball teams that I run, singing lessons, rock climbing, homework, dancing, fund raising for the football team Matt runs the list goes on.
On the outside I was Jane that could do it all and with a smile. Always able to sort everyone’s problems and loved doing that but somewhere along the way I lost myself. Because I had always exercised and was on the go all day I never sat and watched TV – I costume made or wrote lists of things I needed to do!
I could eat what I wanted and did but my oldest daughter had an appetite like me but did not burn it off so because she was not happy with herself she joined weight watchers with a friend. It was easier to all eat the same. I lost weight which I didn’t really need to do and cut out all the fat. I had no energy to go for a run which had never happened before.
Strange things started to happen. A customer asked the way – I could see it but I couldn’t tell her how to get there. My eyes started to go funny; I was giddy and kept needing to take deep breaths. I got cysts in both eyes. I looked awful had cold feet and ached. I was so tired but could not sleep. I would go over and over the shop display in my head.
I would flip at the kids for the silliest of things and then cry like there was no tomorrow and I would do all this with out Matt knowing as I felt he had enough to be worrying about.
I organised the Halloween party at the football club and it’s the best party around so all the mums say. I transformed the club in to a haunted house it takes days of planning. It was a success and I did it with the flu I pushed on through and then I collapsed on the Monday – I just could not move or talk.
I was sleeping on a mattress on the living room floor as we were having the bedroom done in an effort to have order. We had painted all the way through. I have always reacted to paint, it makes me feel like I cannot shut my mind off like it is on alert.
At first because my eyes swelled up we thought it was the paint. So I moved over the road to my mums, we thought no kids, no phones; no visitors just rest like I did before. As soon as I felt a little better I would get up but quickly would get out of breath and feel so ill and flu like. I would look on the computer and scare the shit out of myself.
Everyone brought me chocolate, after I would eat it my whole body would twitch and jump I could not get up without clinging to the walls as I was so giddy I felt like throwing up. I went from sleeping to being unable to sleep and if I did sleep my nightmares of stopping breathing and being paralysed were so frightening I dreaded the night.
I could take no noise not even some one whispering. My daughters would stroke my head and I didn’t have the energy to tell them it hurt so I would just cry. I had the curtains closed. A pillow between my legs as my knees hurt to touch even the quilt hurt. I wanted to cut off my hair because I didn’t have the energy to wash it and I hated the thought of how it must look. I was so cold and yet I sweated this awful smelling sweat. My neck was the worst and I felt like a 20 stone rugby player was sat on my shoulders. I would drag myself to the toilet and wait there till I had the energy to drag myself back and then lay petrified by what had happened to me. How could I have gone from this bubbly girl that everyone said,”Where do you get all your energy from?” to this and how long would this last?
Visitors were a no go it made me feel like dying the thought of explaining this to anyone. I didn’t want to see anyone, if the phone rang I almost stopped breathing out of panic. I cried and cried and cried. The more days drifted the more I pushed myself to try and sit up and the more I pushed the worse I felt.
Matt was amazing thank god. In a way it jolted him out of himself and he learnt where the washing machine was and cooked and reassured me I had beaten this before I could do it again but this time felt so different.
One day Matt came in from work and said he had spoken to a man that had dunked himself in freezing cold water and it had cured him. Against every bone in my body saying, “What the hell are you doing!” I with an audience of Matt and the 2 girls climbed into a freezing cold bath of water!! My boobs felt like they would fall off!! I could manage 20 seconds.They would hold me down!
It was like a miracle the first time I did it for the best part of a day all my symptoms went, returning in the evening so I did it again it eased for an hour the pain in my neck and shoulders but sadly the more I did it the less it worked for. The thought of doing it became like hell I almost wanted to hide under the stairs from them as I would hear the bath taps turn on! Haha!
I noticed if I read positive stuff my symptoms were less but the second I read something that scared me I felt really ill and so quick. I could just about watch ‘Friends’ as I knew nothing awful happened.
I decided I would look for people that had recovered and stop reading any negative stories that didn’t have a happy ending. I read a book by Alex Barton 50 recovery stories I read Alex’s story and saw that he had written a book, I then read ‘Why ME?’.
It answered so many questions and made so much sense. I could see he had been to hell and back and anyone that had felt that awful and not given up must be a better option than some of the so called cures I had read about. The thought of passing and talking for x amount of mins a day, just again filled me with horror how could I do that with a family and a business running around me?
On phoning for my 15 min chat we had decided – look we can not go on holiday we can not even go to the pictures or go out to eat I am bed bound for god sake. We are all scared shitless that I am going to be stuck like this, we have to try and give this my best shot.
I was scared that the last thing I needed to be doing was throwing money at something, if it didn’t work I would just read as many books as I could and do it by myself. I was worried that I wouldn’t be well enough to even get in the car. But in my chat Lesley from nutrition said to eat high protein I had been detoxing as I had worked out sugar was my worst enemy. This made a huge difference quickly I found I could eat then shower on my own which was a huge step forward.
As ill as I still felt I just felt I was doing some thing and I had a goal to get to the clinic and to beat this.
I can honestly say from the bottom of my heart you gave me the tools that have stopped me from having ME and ever having ME again. Filling out the forms took all my energy but again it was the first time some one had asked me – what was going on in my life? What the hell I was eating? And it felt good to think I was being treated as an individual for the first time.
I just about made it up the steps on that first day.
I was dreading meeting any new ME sufferers – I had enough friends I felt bad enough I had not even sent Christmas cards to the people I loved the most in the world let alone making any new friends . But I can not stress enough how lovely it was to sit with other people that were trying with the same goal in mind to not just live with ME but get rid of it .
I have made a friend for life Celia, she is an amazing lady and we have taken every step together and I am so thankful we were in a group and not on our own which I never thought I would say.
I made it through the first day but felt myself going down as I was about to leave. I got home and thought well here goes. I used what I had learnt that day and I had the biggest break through on that first night alone in the bathroom with my family listening at the door as I cried happy tears. That was the first time I felt for sure I can beat this and it felt amazing. I went in feeling like death and thinking I would not be able to complete the next 2 days and came out feeling like James Brown on the hall landing!!
The following day I went in explained what had happened and the relief was so huge. I had my one to one talk and cried like I have never cried before. I looked around the room because it felt like someone else was in there crying too it was a bit scary and embarrassing Sarah my coach did some EFT on me and then that had an amazing effect on me too!! I calmed right down and thought Jesus Christ this is money well spent but so different to what I thought it would be.
I noticed that all the time I was there I felt so much better than when I was at home alone with my thoughts and fear of what ME had become to me. I worked a lot on the achiever in me and the helper and noticed where my energy is used up.
My mum, whom I love to the moon and back, would be devastated to know that I felt sick when she was near me her perfume, her voice. My dad was always very positive and everyone liked him he was genuinely a lovely happy kind person. My mum was always negative and only saw the bad in people and delighted in pointing it out, sadly 9 times out of ten she was right! But my dad died 12 years ago my mum then came to me with all her worries and problems I didn’t mind but when I was ill it was like my body shut down on me when she was about as if it was saying you have nothing to give.
On the second day of the course I phoned my mum as I knew how worried she was, as soon as we had discussed what I had learnt she had a little cry then proceeded to tell me my brother’s little baby had a heart murmur!! I instantly struggled to breathe, my thoughts were I need to phone my brother – I need to tell him it will all be ok – I need to read about it.
At that very moment I realised how I suddenly switched to helper mode. I have realised how I ignore my own feelings and rather than face them I fly around mending other people’s it makes me feel better but when I couldn’t mend Matt’s anxiety over illness which I also think started when he hit 40 because my dad died at 53 and he was a fit man full of dreams and plans it shook Matt that may be he only had a few years left and all he was doing was worrying about work.
I used so much energy making everyone around me happy. I truly had forgotten how to listen to myself and what I found was that in my recovery as soon as I was going back to doing something I didn’t really want to do I felt my symptoms start so it really was as simple as doing what I wanted to do !
For years my mum, Matt, my brothers, my friends would grab hold of me and say slow down and I would think yer yer alright get off I’m fine I can keep going . Three Christmas trees, lights off the bloody chimney!! School play costumes even when my kids have left the school!! All my brother in law’s Christmas shopping and at least 18 to dinner every Christmas. On top of my kids having 5 veg and a message in their packed lunch everyday. An after school club everyday then over to the shop finish at 1 in the morning come home up at 4 for a 7 mile run before market !! I would stop for no one. Until my body stopped for me.
On my journey I learnt so much about me. I was invited to an Ann Summers party – last thing on my mind but I thought I would go along and stay in the back ground. Everyone was pleased to see me. It was the first night for the two young girls that were doing the party they were nervous and I remembered back to when we used to do party plan. They needed someone to try clothes on. It was the last thing on earth I wanted to do. They asked everyone, everyone said no when it came to me they all started to shout, “go on Jane!” I started to sweat I could feel my neck going. This young girl looked at me with such bleeding in her eyes before I knew it I was in the hall in a nurse’s outfit! But I realised something big that night if I was sat at home with Matt I would be feeling fine, here I am pleasing others making them enjoy their night. I didn’t want to wear a bloody nurse’s outfit but I felt like I was letting them all down. The old me would have done it without a thought even though I wouldn’t have wanted to. It used up so much energy I felt ill by the time I got home. I did my stuff and realised it wasn’t going out it was the energy it took out of me keeping everyone else happy that made me feel ill.
On those nights when I can honestly say I actually wished myself dead, when I soaked my pillow with tears and Matt’s breathing made me feel sick I never dreamt I would say I am thankful to ME but I am. I was scared of change. I liked who I was I didn’t want to be told to slow down. I am still me. I just am kinder to me now I listen to myself. I feed myself instead of everyone else and thinking I will eat later. I am aware of how I go in to over drive when I get on the stall. I have never been so scared of anything before and to loose my will to live, my sense of humour, to not want my kids to touch me to be laid flat in the dark was what it took before I would listen to what my body was yelling out for. I understand that now and I respect it.
I have been extremely lucky I have a wonderful husband who I might add has benefited massively from the program too, friends that let themselves in cleaned and cooked, run kids about and worked for me, I did not have the pressure of losing my job. But money has been tight but obviously my health has to come first I realise that now.
I can say I am proud of myself. I now take myself off and meditate – it’s like finding a little peace of heaven. I bike ride 10 miles no worries I am still rebuilding my adrenals and working with Lesley. I now go to toilet regular (classy!) I have not had one migraine which we have worked out as I am allergic to dairy and have suffered at least once a month since I was 14 losing a day and a half each time.
I have the world and their friend juicing and tap on everyone for everything. I no longer push on through I know the warning signs and I know the consequences if I don’t listen and I will not go back there ever again.
The 90 day program and the website were what saved me from losing years to ME. I feel so sorry for anyone trapped without the tools to calm down it is hard work and the fact that you have said right from the start it will not be a straight line to recovery helped. I have been listened to and treated as an individual. You told me it will be hard work, I have never been afraid of hard work but I didn’t know where to start. So much of what I was doing was wrong for me.
I am no longer afraid to go to sleep. I don’t panic if I feel tired. I can say no. I can help with out it becoming my problem and I can say well done to myself with out following it up with I should have done that or if only I had done this!
I relate to my folder when ever I need to and I plan to study with OHC so I can go on to help others I find it hard to put into words how much I owe to you all for guiding me and making me feel supported every step of the way.
Thankyou so much Jane Hume xxxxxx