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New Phase: Part Three of Three

On March 15, 2018, in M.E. diary, by Sally

I have been in my perfect cottage for almost 2 years now. I am still slowly getting things how I want them which is unusual for me. In the past, everything would have been unpacked and put away before bed the first night and I would have half-killed myself doing it. I put my mattress on the sitting room floor and slept there for about a month, surrounded by boxes, because I had no furniture. I sold everything apart from my very expensive mattress, my electric piano, an Ikea chair, a side table – the first piece of furniture I ever brought aged 17, and a folding table that would fit anywhere. The cottage is so small that none of my old furniture would fit in it. Everything in the cottage has to be flat-packed and built in the room (including the sofa!) so I needed to take some time to find furniture that would fit in the house, literally and aesthetically.

One of the things ME has given me is unlimited patience (for most things). Before ME, if I wanted it, I wanted it now. I couldn’t hold on for anything. Everything that needed to be done was done immediately and fully – no waiting and certainly no resting until the job was done.

I am pretty sure I have written this in a previous post but I clearly remember the day that changed my life. I was already very ill and had been in bed for a few weeks. One morning the sun was shining and it showed that the house was really dusty and dirty. I decided that I was going to clean it. My routine before I became ill had been to start at the top and work down. Every Friday I would clean windows, skirting boards, under everything, change beds, hoover, dust, tidy as I went and I could get the whole house immaculate in four hours. I wouldn’t be able to stop until it was perfect. So on this day, I stripped the bed, which at this point was not being done on a weekly basis, and went down to get some clean sheets. Because I knew that going up and down stairs was one of the things that took the most energy from me I decided to bring the hoover upstairs with the sheets to save me another trip downstairs. I got back into the bedroom (I’m on the top floor of a three storey house), left the hoover in the middle of the room, put the sheets on the window sill, looked at my bed, climbed into it with no sheets, duvet cover or pillowcases and that is where I stayed for the next three days. Literally only getting out to crawl to the en-suite loo and once a day to go downstairs to the kitchen for a drink or a piece of bread. On the first day I would wake and look at the hoover and feel really irritated that it was in the middle of the room and needed moving back to its home. On the second day I was thinking it won’t kill me to have it there one more day and by the third day I didn’t care if it stayed there forever. I realised that it wasn’t hurting me there and that it really did not matter where it was. Those three days not only changed but probably saved my life. I no longer feel compelled to do anything. I am not obliged to kill myself to achieve something that no one else would even notice. I no longer need to be perfect in everything I do! It makes life SO much easier, and happier!

Sooooo, I live down a footpath in a little jumble of cottages and gardens. I have a really pretty front garden and behind me, out of my back windows, I can see someone elses really pretty garden. I have furniture and last winter had a cabin (which my kind and lovely youngest son made possible) built in my garden (it’s been insulated and plastered inside and has an electric light and sockets (Christmas present from my fab brother) which will be my spare room and music/craft room. It is full of things (cr*p) from the old house which were stored in a lockup waiting for me to eBay and car boot and which I have promised myself will be taken to the dump/charity shop if I haven’t managed to unload them by the end of May 2018. I fully intend to have a summer house, come spare room, come music/craft room this summer. The piano has just been moved out of my tiny sitting room and I love how much bigger the room now seems.

Not the prettiest picture but this is my new ‘shed’.

 

 
W

New Phase: Part Two of Three

On March 15, 2018, in M.E. diary, by Sally

I spent a lovely year sharing Sally and Emilys home, and life. Sally is a highly qualified, and experienced, nurse and between Sally and Rosie, who could always be found lying outside my bedroom door on any day I was really struggling (it was uncanny how she always knew), I blossomed while I was there. I started being able to make my own basic food (mostly the least chemically contaminated microwave food on a bag of rocket) on a daily basis. With the stress of bills and house maintenance lifted from my shoulders my health very very slowly improved. When I moved back into my family home of 22 years in March 2015 I thought I was capable of looking after myself and the house. Hmmm.

I had a nostalgic but happy year saying goodbye to the family home (helped by Jade, Jake and family friends) we all loved so much. It was a lot easier to say goodbye than I had imagined. Nothing stays the same. While I had been away a few of the neighbours had changed and things weren’t as peaceful as they had been. When we first moved into the house we  totally renovated it, the children were babies, and we loved to entertain with ‘bridge’ parties (the house has a river/mill race running past the back door and there is a house width bridge crossing it and joining the house and the garden) with friends and family that would run on into the early hours. Now I was getting payback for all those years when we were the noisy neighbours.

It was lovely to see the village regenerating. When we first moved in there was one other child. Within a year or two most houses had children. We had such a happy life in the village. The children all got on really well, there were a school and a bus route at the end of the lane and the neighbours were all lovely. Twenty years later all the children had grown up and moved out. Now, the older generation were starting to sell up and young families were moving back in.

If I had been well I would have loved being in the middle of all the hustle and bustle but part of ME, for me, is extreme sensitivity to noise (and light, and heat, and cold, and food, and meds blah blah blah) so normal everyday sounds made me feel really ill. Ill in a way that is very hard to describe but a big part is that it causes anxiety … something I had never felt before ME. Such a horrible feeling and when the noise goes on day in day out with no end in sight it was unbearable. To be fair the new neighbours were absolutely lovely and were apologetic, without me complaining (which I managed not to do to them although I would download onto my friends), and I reassured them (at least I hope I did) that it was all fine … they were doing nothing wrong at all but it really, really, wasn’t fine.

My friend Sally and her daughter Emily, who I stayed while my house was tenanted, were downsizing and, via the internet, I was helping Sally find the perfect new home for them. I decided that I would sell my home and buy some land, build a cabin to live in somewhere remote and peaceful and live happily ever after. I realised that I needed somewhere practical and manageable (small). I needed a cleaner in the family home (4 beds and 1.5 bathrooms on 3 storeys) and I really wanted somewhere I could look after on my own – a cabin seemed the only solution because I couldn’t afford a house in a quiet place with a pretty outlook. Or could I …

Sally was struggling to find anywhere she really liked. I was struggling to sell to someone with small children (I really wanted it to stay a family home and for another family to be as happy there as we had been). One afternoon my estate agent rang to say he had a young couple with him who had just come in to put their house on the market and he wondered if it would be ok to bring them over, now, to view my house. I said fine. Later, when the estate agent rang to say they loved it, had to hold off for a day or two because their house wasn’t even advertised yet, but wanted to make an offer, I asked him what they were selling. I realised it was exactly what Sally was looking for so I rang her. While I was on the phone the estate agent was calling her so she left our call and took theirs. They were ringing to tell her about the same house. We viewed it the next morning. She made an offer on theirs. They made an offer on mine. We all accepted our offers. Yippee! We were moving!

I then spent a couple of weeks happily not panicking about where I was going to go. I have learned that the Universe usually sorts these things out for you one way or another and if you dont plan, look, stress about it things have a way of working out better than you could have imagined. My friends and family weren’t quite so nonchalant about it and one afternoon I came off the phone from a lovely hours chat with my dad and found I had 3 missed calls on my mobile, a couple of text messages, a couple of messenger messages and an email (which I hadn’t seen), from Sally. I rang her thinking something awful must have happened. She had found me the perfect cottage. I reminded her that I couldn’t afford a house. She asked me to indulge her and come with her to see it and that if she had to put the extra money I needed on her credit cards I was having this house … she knew it was mine.

Of course, I fell in love with it and after some boring struggles which I won’t go into we all moved house on the same day – May 9th, 2016. Sally into my buyers house, my buyers into mine and me into the tiniest, most beautiful, perfectly formed, one bedroomed cottage you could ever wish to see.

Cottage

 
W

New Phase: Part One of Three

On March 15, 2018, in M.E. diary, by Sally

It has been a tough couple of years … as may have been made obvious by the lack of posts.

The Nottington to Nottingham move lasted 3 months. The friend I moved in with, although the gesture was well meant, wanted more than a friendship and became angry and resentful when it became more and more clear that I wanted only to be friends. As friends, we got on very well and had lots of fun times but the pressure started to wear me down and make me really unhappy so I decided to return to my hometown and my support system.

That decision should have been easier than it was but having let out my house for 13 months (so that the tenants wouldn’t have to leave just before Christmas) I had nowhere to go back to. Finding somewhere to rent was proving more difficult than I imagined. The first place I wanted to view (a gorgeous cottage on a footpath called Artists Row … how utterly romantic is that) was open to taking a tenant on state benefits once she found out I had ME because, sadly, her son had been diagnosed with ME as well. Her kindness brought a tear to my eye – I had been fearful that no one was going to accept me as a tenant but the first place I found, that I thought I could be really happy in, would. I have always felt I was an extraordinarily lucky person – these things often happen to me … perfectly timed ‘c0incidences’.

I had to then find a way of getting to Weymouth and back again. Train. It was almost impossible to travel unaccompanied as I would forget where I was going and just get on any train with a familiar destination. I once got on the Bristol train instead of Weymouth even though I had the correct train written on my hand, typed into my phone and I had been walked to the right platform entrance. The friend who took me wasn’t allowed on the platform without a ticket but I only had 10 minutes to wait …what could go wrong!?! I heard the announcement for the Bristol train and got on it. In hindsight, I can see why. My son is at University there and, from Weymouth, that was the train I was most used to catching.

Thankfully the conductor found me a new route home. I rang my son to tell him what I had done and he came to Bristol Templemeads, talked his way onto the platform to meet me off the train, and we spent an unexpected, but lovely, hour or so having lunch and waiting for the Weymouth train. He was allowed back onto the platform to see me off on the right train as well. The whole saga was all another stroke of good luck really as I got to see my boy!

Anyway, on the day I decided to leave the move for another three months, a friend rang me and told me that she recently had coffee with a school friend she hadn’t seen for years. This woman, another Sally, was splitting up with her husband and was looking for someone to rent a room from her. She didn’t mind if I just came for a month to give me a base to look for somewhere more permanent. I moved in. Fell in love with Sally, Emily (her daughter) and Rosie (their Springer Spaniel) and stayed until my tenants left and I moved back into my own home. They have become part of my family and my two babies (23 and 25) and Emily (23) all think of themselves as brothers and sisters which is lovely!

Here is a photo i love of my “children” holding me up and dragging me around the ice-rink. I found it absolutely impossible, which was hard to swallow because I had spent a lot of my youth racing round Bristol Ice Rink in the 70’s.

Emily, Jake, Sally and Jade

 

 

 
W

Weymouth Calendar Girls

On December 16, 2014, in M.E. diary, by Sally

Im March last year my friend and dear landlady for the last 9 months, decided to top the makeup less selfies by offfering to do a topless one if someone sponsored her. Myself and many of her friends offered to join in and Weymouth Calendar Girls were born.

The first shoot took place 10 days after Sallys Facebook post offering to go topless and by then we had already raised just under £2,000 in sponsor money.

It was SO much fun. We spent the day shooting in various rooms around the house with a professional photographer who acted as if we were fully dressed so it became easier and easier as the day progressed – which might have also had something to do with the copious amounts of bubbly that we were being offered. We had so many props and room themes that when it came to choosing which photograph of which girl or group of girls went into the calendar it was very difficult. Rock chicks with guitars, ladies at tea, tennis and football, bubble bath, pillow fights and pyjama party. The first photograph was a baptism by fire – we all trouped outside topless to a pink limo that had been lent to us for the day and posed with pink umbrellas along its side – much to the amusement of the passing traffic and pedestrians -by the time we went back inside we were really fired up and ready to do what had to be done. I don’t think anyone really cared after that what anyone saw as we were all friends in the same situation.

Our second shoot was held on Weymouth beach in the afternoon and a traditional Weymouth fishing boat, the Sarah Louise, in the evening.

It wasn’t as easy to plan as the first shoot, at Sally’s beautiful home, as we needed to get permission from the council and various other agencies to shoot in public locations – they were all supplied free of charge as we were doing it for charity and we were set.

Three very nervous girls arrived with the photographer outside Greenhill Beach Huts on a busy Saturday afternoon. We had our pink ‘Weymouth Calendar Girls/Going Topless for Breast Cancer’ T-shirts on and the love and support that was shown to us was overwhelming so we soon started to really enjoy it.

My favourite calendar girl photo

The third shoot was Christmas themed, in September, back at Sallys house. Sallys Aunty Marg came and decorated the Christmas tree for the shoot and helped make the house look wonderful and Mama and Popsy came, as usual, and supported and helped out … along with many other people. It was a wonderful day again!

A few weeks before Christmas the calendars went on sale and we had ‘fun’ nagging various people and companies to sell them and also friends and family to buy them from us. We raised almost £3,000. What an incredible experience – a memory I will treasure forever.

 

 
W

Nottingham or (go) bust!

On December 9, 2013, in M.E. diary, by Sally

I have moved! It all happened so fast which is unusual for me  – since I’ve been ill the norm is that nothing happens at all no matter how hard I try.

2013-12-02 08.13.03

A friend of 16 years who has been in the background throughout the abusive relationship with my ex and supported me through a lot of problems  – relationship and computer-wise (the latter being the most helpful to a brain fogged mind) and offered me a life line which I surprised myself by grabbing onto with both hands. Never one to ask for or accept help from anyone, however close, I shocked myself by realising that it was the only thing to do. Sooo … I find myself in a very modern two bed duplex just off the centre of Nottingham and am actually really enjoying it. I’ve never lived an urban life before – country girl born and bred so its going to be a big change.

When I say living an urban life – obviously only the view has changed – my life is still based around my bed and the settee but I do feel different and full of hope for the future now.

I have rented out my house as a whole after realising that being responsible for the bills and upkeep was causing too much stress – especially as I was virtually forced onto benefits when my ME specialist asked me why I wasn’t using the system and put me in touch with an amazing service who helped me fill in all the forms. Needless to say the ESA guys have messed it up totally all along the way and if I hadn’t decided to move out the decision would probably be out of my hands by now as my first mortgage payment ever has just bounced – four months down the line they’ve still not get the payments right and in my account. I have my PIP assessment on the 17th December after having also waited four months for that but I’m under no illusion on that score and not holding my breath.

Paying rent on a weekly basis and not having to worry about bills or work has made a significant difference to my health and once the divorce and money owed to me by my ex is sorted out all the stress will be out of my life – I can see light at the end of the tunnel for the first time in years.

 
W

Summer of Fun

On May 31, 2013, in M.E. diary, by Sally

As every day goes by im getting stronger and stronger. My lodger, who moved in a couple of days after my abusive ex husband moved out, says he wishes he’d taken a video of how i was 9 months ago so that i could see how much better i am now. Of course I’m still beating myself up when i go out or have a couple of appointments in the same week and get tired and ill from doing too much but the main difference i can see is that i CAN actually go out now whereas i just couldnt even get to doctors appointments very easily under my own steam before.

My Post Traumatic Stress Disorder (PTSD) counsellor and the Chronic Pain clinic both tell me that the dramatic improvement is because i have the stress, that my ex caused with his bullying controlling behaviour, out of my life and my body is starting to heal without the setbacks the dreadful anxiety i used to feel on a day to day basis upsetting my system. I believe that the adrenaline spikes caused by the anxiety and fear i felt continually send your system into overdrive and there is only so much ‘one’ can take before you get to overload and your body gives up.

The final bit of stress from that relationship will be to get the divorce finalised –  im finding this stressful but knowing that there is a positive reason and a happy ending makes it much more dealable with. I also have to take my ex to court for money he owes me and this too will be stressful but i have an amazing solicitor who has just told me not to worry, that he will deal with it  and assures me that the money will be back where it belongs in no time at all. His nickname is Cut Throat so i have a feeling im in safe hands.

So, i have been looking foward to the summer for nine months now – we’ve nicknamed it the Summer of Fun. Ive felt that summer was going to be the start of ny new life and a new me for months and its starting to look like my intuition was spot on. I spent a wonderful day last sunday at a beach cafe with friends, drinking wine and listening to bands. Bath and West Show today – im well enough to get on the train for an hour, my daughter and her friends are picking me up at the other end, and i cant wait!

 
W

Fiona Smith

On May 13, 2013, in M.E. diary, by Sally

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 :-)

 
W

On the road again!

On March 13, 2013, in M.E. diary, by Sally

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!

 
W

Update 9th March 2013

On March 9, 2013, in M.E. diary, by Sally

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 :-)

 
W

Party girl to party pooper – Part 1

On November 5, 2012, in M.E. diary, by Sally

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.