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 it all 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 banana. 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 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.

Update: May 2019 Garden is beautiful and my cabin is now empty of cr*p and a very pretty fully functioning, and used, spare room.

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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.



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