Consequences

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.

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Truth v Gossip

There is one thing that I have found since having several chronic health conditions that people simply do not understand and that is the fatigue levels that come with them. I know some people have created this fairy tale in their heads that either have withdrawn from society or that Mr Myasthenia Kid doesn’t let me out in the world. People stupidly believe this gossip rather than actually ask me. They are simply untrue, the reason I don’t go out very much is because I get so exhausted by doing very little outside the home.

At home I have an environment I can control. I have regular household sounds, lighting etc. All of which my body is used to. The minute any of that becomes too much I can go to bed, lie down, limit the light and sound. Out of the home I have zero control over the additional stimuli my body is bombarded with. Also these days I am using a scooter a lot of the time, the concentration levels involved in driving this even for a short period of 20 minutes, drains me. It makes it hard for me to manage a conversation and drive. The minute I don’t concentrate like when driving a car accidents can happen. I have almost gone off the sea wall down at the seafront because I was trying to talk and drive. It takes a lot out of me and unless you have to balance your activity and rest periods people just don’t understand it.

Since Sunday I have had an extraordinarily busy week, for me. For normal people this will probably sound like a leisurely few days. On Sunday we went to Pets at Home the big one so around 20 minutes in the car to get there. Then we went to Tesco to upgrade our phones which took about an hour. We had Dembe with us who behaved beautifully. There were lots of people in Tesco that I knew that haven’t seen me since I have lost 49lbs in weight and who also wanted to meet Dembe. So it was very busy. After the morning we had around 90 minutes sit down and then we went to visit friends with Dembe. It was lovely to see them both and Dembe really enjoyed his visit too. However by 6pm I was completely drained and was up in bed resting, before dropping off just after 8pm.

Many of you will be thinking how can that low level of activity wear you out? I wish I knew, my only explanation is the assault on all my senses just physically and mentally wears me out. The extra noise, people, lights, smells, physical activity of driving a mobility scooter. Being upright with my legs down and blood pooling, changes in temperature, all those things combined just zap any charge that was left in my batteries. On Monday it took me hours to get moving. I was fit for nothing until about 2pm, which is crazy. My body just felt like there were 15lb weights attached to each limb and my head, well I just couldn’t really focus on anything that demanded more than a limited amount of mental acuity. 

On Tuesday I felt a lot better as I had spend Monday recuperating, which again if you have never suffered from bone crushing levels of fatigue you would struggle to understand. We needed to take Dembe to the vets to be weighed and to get his worming tablets / flea / tick treatment. We were there around 20 minutes as we like to have a catch up with the staff as Dembe is very popular there. We then popped up to Tesco for a few items, we took Dembe with us to give him some more environmentalization training. We only needed three things but Dembe has such a huge fan club amongst the staff and customers that it took 40 minutes. I then spent as much of the afternoon as I could resting with my feet up as in the evening we had our first night back at our weekly dog training class.

Evenings are the absolute worst time for me to be out of the house. Purely because I go to bed every evening between 7pm – 8pm or earlier if it is a rubbish day. By then I struggle to hold myself upright, co-ordinate my movements and as I discovered last night I can also end up struggling to talk because my brain can’t channel the words to my mouth. Ending up with me looking like a fish out of water. I thought I would be ok, after all I did the dog training in the summer. But I don’t think I had been out as much during the day. The dog training lessons are intense. Even though I just sit there and let Jay do all the training. I can’t do the walking around or being up on my feet that much. 

I coped ok in June and July so it was really surprising ( and frustrating ) to me last night to get half an hour in and to start feeling really, really unwell. I don’t know about anyone else but I hate having to ask for help or potentially making a scene due to being ill. I have in the past been known to wait for everyone to leave the room before I have allowed myself to projectile vomit. Thankfully there was nothing for anyone to see, although I may have gone more pale than normal. I just suddenly had the internal organ sinking feeling, then felt I experienced some feelings of dissociation. I knew I was in the room but I didn’t feel I was part of it. Unless you have felt this it is a difficult feeling to explain. I can feel like this just before I faint and I knew that is what my body was preparing to do. As I was sat down I rapidly starting clenching my bum cheek and tensing my calves in an attempt to get the blood moving. The whole time I was absolutely terrified I was going to wake up surrounded by people having taken a nosedive from the chair.

The weird thing was I could see poor Dembe trying to alert Jay to what was happening as hit lay down on the floor and had his head turned to me. He was watching ensuring I was ok. When I spoke to Jay afterwards to let him know what had happened he said “why didn’t you get up and go to the car so you could lie down?” which is a reasonable enough question as normally I do have quite a bit of warning so I can avert a faint. I just said to him that I felt so bad I was terrified if I stood up that I would go down with a bang. He then said “well why didn’t you shout me?” the simple fact of the matter was I just didn’t want to do anything that would draw attention to me.

 I really HATE the spotlight being on me, I hate it even more if it is because I am having a funny turn or have fainted. It is stupid I know but I just can’t, it makes me feel so very uncomfortable. Like I am causing a nuisance or being melodramatic. This probably goes back to various incidents at school and at work where I have been seriously unwell and been called a drama queen or that I was causing a scene. When I was younger I was never believed when I was sick, even when I have had major surgery, I had work colleagues say I was doing it for attention. How on earth you get a team of NHS surgeons to open you up from pubic bone to sternum just for fun I have no idea but apparently I can.

Thankfully my funny turn went after 10 minutes but it left me feeling seriously drained. I spent the entire journey home yawning non stop which is always a sign that my blood pressure has dropped. I was in bed by 8pm and asleep by 9pm.

Today ( Wednesday ) I am seriously pooped but like I always say I’d rather be knackered due to going out and having fun or just living a normal life than being this wiped out from doing nothing. Again it has taken me all morning to get going. I have been up since 7am and it is only now at 13.30 that I am starting to feel human and that I can do anything that needs any mental clarity. On days like this I have to take advantage of any window of opportunity when I feel well enough physically and mentally to be able to get up and crack on with something I want to do.

Obviously having the Weimaraners did curtail my activities outside the house. It was too expensive to get dog sitters in all the time and there are only so many times you can ask friends to do it for you. They were too destructive to leave by themselves, so in the end it just became easier to not go out or just one of us go, than stress out about finding someone to stay with them. Our friends have been fabulous, Imogen looked after them so much in 2015 when I had my CSF leak. If it hadn’t been for her I wouldn’t have been able to attend half the appointments I did. She also looked after them when we went to the Emma Bridgewater factory for the day which was a 14 hour (plus) stint . My friend Sharon also did us a massive favour when she stayed with them so that Jay could appear on Sewing Quarter TV. Both Ellie and Heather have stepped up too and looked after them, along with Tracey, Sarah and so many others over the years. But even with that massive pool of helpers it wasn’t fair to continually ask them to look after them. So our outside activities took a back seat, plus a lot of the time I just wasn’t well enough.

Now we have Dembe and we are training him to be my assistance dog it means the whole world has opened up to me again. It is really weird after having 12 years of not really going anywhere but the hospital, the doctors surgery or the dentist. Those visits also wiped me out. We are so used to being home we are having to force ourselves to go out. Which is another reason why we are doing all the training with Dembe as it means at least once a week I will leave the house and also that he will be a well behaved assistance dog whom we can take everywhere with us. But I will always have to pace my activities. I will never be well enough to go out all day, every day of the week. I just don’t have the stamina or physical reserves to be able to cope with that. And that is fine with me. I do quite like my own company and being able to do the things I want to do. I guess I am saying I like a balance.

So when someone tells you that someone is a recluse or that they aren’t allowed to go out. Have a good long think about that person’s circumstances. Think about if they have a chronic health condition, suffered a bereavement all manner of things that could be the cause of them not being outside in the world as much as you think they should. Don’t take the easy option and accept the gossip no matter how credible the source because it is just that their take on what they “think” is happening. Which doesn’t make it the truth.

I am a survivor

Well I am still not feeling the blog. I don’t know what’s going on but I am really finding it hard to come up with stuff to write about. I am spending 7 days waiting for inspiration to strike and it just isn’t happening. By Tuesday each week I am in a bit of a panic, I like to try and write on a Tuesday if Jay goes out running errands. If not I will wait until Wednesday morning but I don’t like leaving it until Wednesday as I always panic if I have a migraine or something and no blog post is produced.

At the moment the days are just merging into one. I haven’t seen any of my friends for over a month although I keep in regular contact with some of them. I have come to realise over the last 8 months that some of the people that I thought for there for me, disappeared when Frankie and Mollie passed away.  I understand that everyone has their own lives and families, with their own shit to deal with but it has been a very isolating experience. Some people have made a supreme effort to be present and other well not so much. It’s ok as I have a long memory and will be sure to return the favour when the shit hits the fan in their lives. I didn’t expect to be visited constantly but the occasional text message would have been nice, especially when they know my situation of living alone and Jay working.

Thankfully though I am pretty self sufficient, whilst dealing with my grief, I was juggling a new puppy and attempting to find time to sew / embroider. It hasn’t been easy but Dembe and I have found a new routine that works for us. He is pretty good at entertaining himself whilst I am busy sewing. He always positions himself in a location where he can keep an eye on me and ensure he knows if I have moved. He likes one of three places, the bed by the washing machine, the sofa that looks into the kitchen or out under the gazebo on the bench surrounded by all the cushions. I can’t believe my luck that he doesn’t get bored and then start destroying things. When I have finished sewing he knows that is our time and I will ensure I spend the time playing with him, doing training or just cuddles depending on his energy levels. I have been blessed with a pup that is so very well behaved and so very loving. His favourite spot for sleeping is right beside me on the sofa. This is him right now as I am writing this post.

My life has totally changed this year, I have re-assessed a lot of relationships. I have made the decision that I won’t swim an ocean for people who wouldn’t jump a puddle for me. I have decided that instead of worrying about what everyone is thinking or saying about me behind my back and believe me you’d be surprised the shit I hear being spoken about me by people who should know better, that I shall just carry on living my life and enjoying myself. The best revenge on those sad twats is to enjoy yourself and plaster it all over social media. It totally then fucks up all the fairy tales that they have been telling people for years.

I am also getting out of the house a lot more, this does have to be limited and planned for. I haven’t suddenly magically got better, it is just with one dog things are a lot easier. Especially as Dembe is such a friendly dog and on the whole pretty well behaved, although we have now hit the teenage years and recall seems to be a take it or leave it thing! Fatigue still grinds me down. I like using my energy for things for things that make me happy. So using my mobility scooter on Woodbury Common and getting out with Jay and Dembe has been unbelievably healing and grounding. 

It has been the one thing I have missed most since I got sick. The wheelchair trike although brilliant is an absolute ballache to transport. The wheelchair is fixed framed so that would take up the whole boot and then I would have to juggle the trike attachment with me in the front of the car. Not exactly safe. Then I piled on a load of weight when I developed my CSF leak and was virtually bed bound for a year, then in 2017 and 2018 we suffered a number of bereavements and I tend to self medicate with gin, chocolate and junk food / takeaways. I was 5 stone over the optimum user weight for the trike. So anytime I did try to use it the battery drained in minutes. I’ve been too embarrassed to say that because I allowed myself to get fat as fuck, I haven’t been able to use it. Hopefully now I am back losing weight ( it’s taken me until the last month to feel like I can actually do it) and I am back to 3 stone down, ideally at least another 3 to go so I will be massively under the optimum user weight. The trike will be used in the future as it is more suited to the rough and rugged environment of the common.

I do love my mobility scooter though and it has given me back my independence. It is easily taken apart to it can fit in the back of the car. It makes life so much easier if I need to go to the doctors or the hospital for appointments.

Over the 2 months I have got back into sewing and actually enjoyed it rather than feel I am going through the motions. From January until June I made a bloody good show of pretending I was ok, ensuring I used my embroidery machine every week and appeared to be enjoying myself. At points I felt like I was dying inside. I felt like a shell of the person I was. I didn’t feel I could voice the pain I was in. I know others struggle with grief especially when it is over an animal and not a human being.  Like I said earlier it has been one of the most isolating experiences of my life. There just felt like there was no one there. I do wonder if there had been someone their if I would have still felt so isolated.

I do have a tendency when things are tough to disappear into myself and attempt to shut out the world. I still kept on posting on social media, I still kept the creative things going but in all honesty I was going through the motions. It is only now that I can watch anything remotely sentimental without breaking down immediately. I only now feel like me. I feel like I have been on some weird journey where at points I lost myself. It is true what doesn’t kill you makes you stronger because in January / February this year I honestly thought the pain would kill me or I wished it would.

So I skillfully went off on a tangent there, I am enjoying sewing again and being creative rather than having to force myself to do it in the hope at some point the joy would come back. I am still working on my scrap busting quilt sew along. I found out yesterday that it is between a double (bed) and king size (bed) size, so it definitely is the largest one I have ever worked on. I made the back panel for it yesterday.

And in case you have forgotten what the front looks like

This morning I sorted out the wadding ( what you call batting in the USA ) which needed sewn together. I also made some plastic templates  to draw around as I have decided to tray something totally different with the quilting. It has taken me a few days of mulling it over to come to my plans. I have drawn it out so I have something to refer to. I now just need to have Jay clear the floor space in the lounge so that I can put my quilt sandwich together quilt back + wadding / batting + quilt top. I use temporary basting spray to hold it together but as it is so large I will also be pinning it. This ensures that the fabric stays nice and flat so it doesn’t shift and give you puckers. I also managed to sort out the binding yesterday. So it is all ready to be quilted shortly. I will be quite glad when it is finished now as I hate half done projects hanging around. I am really ready to now get myself into new projects and stretch my skills.

Anyway I started with no clue where this post was going and have managed to ramble on forever!

Dembe has changed locations

He likes it so he knows exactly where I am in the house at all times.

I think this year I have learnt, a lot and we are only in August. My heart has hurt more than I ever thought possible without keeling over and dying. I have learnt in the depths of grief you are still able to love unconditionally and you must never feel guilty for that. I have also learnt that the majority of people run away from grief and think that is acceptable behaviour. Despite all this I have come back stronger, love another dog more than I ever thought possible but when you have this gorgeous mutt in your life how could you not?

And yes he is holding my thumb in his mouth!

This is the year that nearly broke me, the year that changed everything and has just proved to me I am a survivor.

Upheaval

Currently our back garden is in a state of upheaval, I know that the end is in sight (fingers crossed it will be completed or at least almost completed over the Easter weekend) . We knew it would need to be done this year but had hoped that it would wait until the summer. At the time we had discussed the plans we still had the two Weimaraners and not a puppy who was hell-bent on discovering every piece of rotten decking and turning it into a huge hole, or carrying bits of rotten wood into the house.

I will be honest I don’t cope well with change, I don’t like not knowing when things will be completed. I must have a plan or my anxiety goes through the roof. I often wonder if my inability to cope with change, tell a story just going from A to B, rather than all around the houses, my problems with textures of foods, materials, clothing, dirt on my hands is a massive signal that I have some sort of sensory processing issue or the fact that I am on the Autistic Spectrum.

 I have noticed at my physiotherapy sessions that I take my therapists instructions literally, I have to look at her to see what she is asking me to do as invariably I will do the literal interpretation not what she has asked me to do. I wonder also if my need to control everything is also born from the possibility of being on the spectrum. I like order and control. I like a routine, changes in routine cause anxiety.

The other “issue” I have although I don’t see it as an issue it is just mildly irritating is that I will get fixated over words and repeat them endlessly in my head. A few years ago for months I was fixated on the phrase / word Beth Din after listening to a programme on radio 4 about Jewish courts ( a Beth Din) and getting a divorce ( a Get ). The word Get also became part of this never-ending repetition of words in my head. I now sometimes panic if I hear the phrase Beth Din worried that it will start-up the never-ending loop of this word bouncing around in my head. Sometimes I will also say the word out loud but it is always when I am by myself. That’s not deliberate it just tends to be when I am by myself the word loop can intensify if I am not distracted. 

I know some people might say that this sounds more like OCD but there is no dread or sense that bad things will happen if I don’t say them or have them on a loop in my head. It is just something that happens and I can go months without having a word doing a loop, today’s word seems to be parallelogram. The words can be because of the way they sound or the way my mouth moves when saying them. I know it’s a bit bizarre and I may regret being so honest about sharing! 

So as I said earlier I can’t get to a point without going around the houses and there was a diversion definitely in the paragraph above. So the garden looked ok to those that didn’t realise that a lot of the plant pots were covering holes in the decking. It was getting to the point where we just didn’t have enough pots to cover them as Dembe was always busy making more.

We are doing the work ourselves helped by friends who have offered up their time and expertise. 

On the Sunday Jay started he pulled all this up really easily as it was all completely rotten. The balustrade was also completely rotten through. Jay made a start before our friend Leanne came over to give him a hand. due to my medical conditions I am not physically able to help and it really upsets me that all I can do is plan and order the things we need. Whilst everyone else does the physical labour. Before I was sick I would have loved to have got involved ( wearing gloves of course!).

In 4 hours Jay and Leanne removed loads of the rotten decking but were stuck when it came to the joists. In some places the joists were rotten so it was easy to saw through them and remove them. However quite a few parts were not rotten and sawing them by hand was taking forever.

Jay asked one of his colleagues from work if their husband had a chain saw and within an hour they were here making light work of the joists that had caused so many problems.

Of course to complicate matters we live in a mid terrace, with no rear access. So everything that is removed from the garden has to come through the house. On the following Tuesday Jay removed all the decking and joists that had been piled up in the back garden and brought them through the house. Cue lots of mud and bits of wood. It then took him a couple of hours to saw the large pieces into bits small enough to get into our car. Thankfully it was only two car loads to get it up the tip.

The following Sunday, Mark who had helped us with the chain saw the previous Sunday came over and helped Jay remove the remainder of the decking and the joists. This time they took everything out through the house the same day so that Jay didn’t have to do it by himself on his day off. This last bit only took around two hours.

The next phase of the garden will be completed (fingers crossed) over the Easter weekend. Due to the soil being heavy clay and water-logged we need to install a drainage system called a French drain to remove the surface water or the gravel that will be going down to replace the decking will just turn into a bog. 

The garden did dry out a bit when we had a few days of sun and wind but as soon as it rains it turns back into the mess you see above.

I had to order 25 metres of land drain which is the black coil of pipe in this photo. Rather unrealistically I believed that it would come in a box – obviously my spacial awareness is lacking. It doesn’t look to big here but it is enormous and had to be rolled through the lounge and then the kitchen to the patio. The small amount of patio that Dembe has had to do his business on has got smaller and smaller as more items are delivered.

We have fence posts, fence panels, garden gate and 3x 800kg of gravel. For someone who likes order and routine it is a lot to deal with on a daily basis.

All the fence posts, panels and garden gate also need painted so we are waiting for three days of dry weather so that we can slap a coat of Sea Grass on them ( same as the fence in the photo above).

I know it will be fantastic when its been completed and that Dembe will have a lovely space to run around in, where he can’t slip and hurt himself or chew through rotten decking boards. And although it is being done earlier than we had planned at least we will have the summer to enjoy it. If its anything like it was last year Dembe will be getting a paddling pool to enjoy as he loves water!

So if everyone could keep their fingers crossed for a relatively dry Easter it would be appreciated.

Human Barometer

We often joke in the EDS community that we are the human equivalents of Barometers. Any sudden changes in air pressure and you’ll find us suffering with a myriad of problems such as migraines, excessive joint subluxations (partial dislocations), dislocations, joint and muscle pain. This week I feel like I have had them all.

 

Monday started with a bang, I felt like someone had smashed me in the face with a shovel. This lead to me spending most of the morning lying in a darkened room. Until I suddenly had a brain wave and decided to see if putting a soft neck collar on would help at all. I have always held a deep suspicion that my migraines are triggered by my neck being hypermobile, I get a lot of pain and stiffness in my neck overnight. I always wake up with a migraine, very rarely do they start when I am up and about during the day. Within minutes of putting the collar on my head pain had reduced by half. Within two hours I was pain free but exhausted and still feeling sick. However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx – right between my bum cheeks to be honest, hence why there are no photos! I have had massive problems with my coccyx this year after slipping on the snow and ice back in March. At the time I was much more worried about my head as I managed to crack it on the back door step. The lasting injury has been to my coccyx, which has resulted in me having to buy special cushions to sit on and to lie down in the lounge whenever I can to take the pressure off. I’ve lost 2 ½ stone over the year and you’d think that my joint pain would be getting easier but it isn’t. The coccyx pain is very uncomfortable, Tuesday it joined in with severe lower back pain which lead to me giving up and going to bed a 4pm. Only after applying my Tens machine for 4 hours did I have any notion of relief. It really was exceptionally painful and made me feel sick. No matter what pain medications I took the pain remained causing my buttocks and the backs of my thighs to spasm. I will be honest I really didn’t know what on earth to do with myself. It wasn’t even particularly stormy here yesterday just a bit gusty but obviously the weather and the air pressure were drastically different to the stable weather – but way too hot in the summer.

 

Today (Wednesday) the UK is being battered by another storm and my body feels like it spent the night being battered by a shovel. Since waking various parts of my body have been covered with a hot water bottles, with very little effect other than to make me sweat a lot as despite the fact the weather is very windy outside the temperature is very warm.My body is overheating constantly at the moment which is leading to me dripping with sweat at the drop of a hat. Either that or I have hot the menopause! So what hurts today? Today as most days I have pain in my lower spine and coccyx, my fingers are swollen, stiff and sore. My ribs feel like someone decided to attack me with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a 

with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the constant waking up last night to take more pain relief. This is not a good day but I have been expecting a run of bad days after having a reasonable week last week. It’s the way it goes plus add in a few storms and my body reacts badly to the change in air pressure.

 

 

I forgot to mention that my shoulders are slipping in and out of  their sockets, making a terrific crunching sound as they do. Today nothing other than just surviving will be done. When I say just surviving I mean lying on the sofa hoping at some point the pain relief I have taken kicks in. There will be no enjoying myself, doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be followed by several if not more bad. Which is why when its good ( when I say good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it. It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing pain that escalates as the day progresses. Sometimes it takes my breath away, it makes me miserable and snappy. I hate the way it can completely change my personality from laid back and kind to nasty and angry at the world. Unfortunately those closest to me bear the brunt of it, with me losing my temper very easily. A technique I have learnt to avoid me lashing out is to just go quiet and not speak. That way I can be horrible to those I love the most.

 

Thursday brings more storms and a trip to see my hospital consultant which is more than an hour away by car. It’s a crack of dawn appointment as well so 90 minutes after this blog post is published I will be on the road. I will have had to get up at around 4am so that I can pace myself whilst getting washed and dressed. I am not looking forward to using my wheelchair as sitting upright at the moment is so painful, added in the 2 hour car journey (there and back) and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven’t seen him since March, it’s a necessary evil – he’s not evil he’s lovely, just the journey is torturous. I have developed numerous issues since I saw him last and I need to get to the bottom of them. One of them is the possibility that I have got Sjogren’s Syndrome ( I have had dry eyes for years but the eye drops are no longer working, my mouth is dry so I am getting numerous cavities and my tongue is sticking to the roof of my mouth when I talk). I need this to be looked at as my eyes are just so painful and with my pathological hatred of the Dentist I need the cavities to stop.More information on Sjogrens syndrome here.

This is such a down beat post and for that I am sorry. I had such a lovely week last week seeing friends and managing to make some bits and pieces.

 

The Christmas wreaths had been half made since August so I managed to finish those by adding hanging loops and bows.

 

I also made a number of Travis bags.

Solitary confinement

I’m used to my own company, I am in fact quite a solitary character. I don’t need to be surrounded by other people, as I can entertain myself. However sometimes the loneliness of chronic illness really gets to me. I am having a wobble.

 

Mr Myasthenia Kid had two weeks off work (as annual holiday) in August, it’s the longest he’s taken as holiday in years. Normally he takes a week here and there throughout the year. Always holding some back in reserve in case he needs to take time off to look after me or take me to medical appointments. Usually by the end of his weeks holiday I am happy to send him back to work, as I have my own routine and ways I like to get stuff done. This time however I am finding hard to adjust to not having him home with me. We had a lovely two weeks together, laughing, talking and generally just being together and now the house just seems so empty and quiet. It’s been quite hard to g back to it just being me for long stretches at a time.

 

It is really hard to explain how empty the house seems, it’s not like he takes up lots of room or that he makes loads of noise. It’s just I got very used to his presence and having someone to talk to. When you are chronically sick and virtually housebound your world gets very small. You only see the people who can be bothered to make the time to see you. Being below retirement age all of my friends are working and have families of their own, so I am very grateful for the time I do get to spend with them . With the pace of life these days, it’s very easy to be forgotten about, out of sight out of mind. I found that back in 2008 when I left work, that all these people who I had known for 12 years who I believed were my friends, just disappeared. They think a quick comment on your Facebook page is a get out of jail free card, it doesn’t replace seeing someone in the flesh and having a conversation.

 

Most of my friendships are now online and I have made some truly wonderful friends. Particularly on Instagram amongst the crafting / sewing / creative community. I am lucky to have got sick in an age where to talk to someone I just have to open up my computer but it doesn’t replace the physical presence of another human being. I am grateful for the online friends I have but I would imagine they would agree that proper physical contact with other human beings trumps any other contact with the outside world.

 

I have always been quite a solitary character, my own company isn’t something that has ever daunted me. In fact there are days where I cherish the time I spend alone. I like being able to step back from the outside world but I also like to spend time in it or as close as I can. I like a balance of both but due to my health being so utterly rotten this year, I have barely seen anyone since the end of June. I have literally gone weeks and the only person I have spoken to is Jamie. Can any of you who aren’t chronically sick imagine what that is like, that the only contact you have with the outside world is with one person? It’s no ones fault, this isn’t a dig at any of my friends as it has been me doing the cancelling due to not being well enough. Is it any wonder now that after having two weeks of company I am finding going back to being alone so very difficult? I am grateful that we have the dogs but their conversational skills are very limited.

 

It’s hard to explain but my heart hurts with the loneliness and the missing Jay. I know he’s only 7 minutes up the road but the house is so quiet it  is deafening.

 

Every year around Christmas time there is always a campaign about loneliness and the elderly. Every year I want to scream at the TV it’s not just the elderly who are lonely in this country. There are hundreds of thousands if not millions of people whose lives are blighted by illness who see no one for weeks on end other than their caregivers or partners. It is assumed that if you are aged between 18-67 that you are in work but there are many of us who can’t work, who are housebound who are crying out for some company yet we are the forgotten ones. I don’t know if it is because people don’t understand chronic illness and can’t get their heads around the fact that there are working age people, who through no fault of their own do not have the social outlet of work and are just forgotten. It’s like we don’t exist.

 

I am extremely lucky I have friends who do come and visit me. I really appreciate those visits and I hate it when I have to cancel due to my health deciding to have a hissy fit. It takes a lot for me to cancel because I don’t know when they will be able to visit again. There are lots of people in my position who never see anyone. I know I am lucky, I am just sad this week as I am finding it so hard to adjust to Jamie being back at work.

 

I know given a few more days I will have got myself back into a routine and I will be used to being on my own again. I thank my lucky stars for my cyber friends who are so supportive and caring. Even though I am shit at messaging people because I am always in my own little bubble. I have an issue where I think of someone, say to myself “oh I must message them” and two weeks later I realise I haven’t. I’m currently struggling with what day of the week it is. Not because there has been a bank holiday it’s purely that I have no clue. To give you an example of how bad it is at the moment, I had no clue today was Thursday and was quite surprised when I started to get notifications on my blogs Facebook page. It was only when I looked I realised that my blog post for this week had been published. I tend to write them in advance and schedule them in to be published automatically. This morning I had no idea that it was Thursday. I do however know who the prime minister is and what year I was born! Just in case anyone is concerned about my mental status. It’s just the days are currently blurring into one.

I also know that the way I am feeling now is probably a reaction to all the stress I have been under lately. My mum has had some pretty major surgery that was needed out of the blue. Adrenaline has carried me through for weeks. Now things are starting to calm down, I have the time to spend analysing my feelings because during that time period it was just getting through that day that mattered. It was a frightening / stressful time. In a year of horribly stressful and sad events. I know I just need to get back into a routine and allow myself the period of adjustment instead of being so hard on myself that I am struggling to adapt.

 

This probably  seems quite a depressing read, I’m sorry. I have just really been surprised at the depth of feeling that Jays return to work has caused me. I don’t think in the nearly 22 years we have been together that I have ever missed him so much. Silly really as every night he is home, every morning he is here. Just at the moment being in the house alone seems a little like solitary confinement.

 

P.s Its over a week later and I am back into my old routine. I am enjoying the time I have to myself and have been really productive on the sewing front.  I have also had a visit from some friends which was really nice. Obviously I still miss Jay during the day but it’s not like the deep ache in my heart I had before. I  am much happier now that I have re-adjusted to the time spent alone.

 

My week

 

Over the last week I have been quite unwell, culminating in an emergency appointment at the doctors surgery yesterday. As is usual for me it wasn’t clear what exactly was wrong. I had severe abdominal pain in the lower right quadrant – I’m no stranger to abdominal pain, I have suffered with it for as long as I can remember. I can remember countless home visits by the gp where I was yet again diagnosed with a grumbling appendix.

 

I don’t think what I had yesterday was my appendix – its still sore today ( just not as bad). I think it is actually a cyst on my ovary, the doctors found one in 2015 but as it was only 2cm in size the protocol was not to monitor it. For years every few months I would get a pain in my lower right side. Loads of times I was convinced it was my appendix but after they found the cyst I realised that this made more sense. I started to track when I had the pain, it was always between the 20th to the 28th of each month and would last a few days. However over the last six months every two or so months the pain ramps up. I have a reasonably high pain threshold and it takes a lot to make me go to see the dr, let alone ring them up and demand an appointment. Normally I’m the patient running in the opposite direction.

 

Yesterday I couldn’t stand up straight when it was at its worst and when I was on the phone to the duty doctor I was curled up in a ball on the bed. I didn’t just have pain on the right side but the whole of my insides felt sore and were burning.  Thankfully the duty doctor agreed that I did need to be seen and set an appointment for an hour later. Thankfully Mr Myasthenia Kid was day off so he could drop me down there. I also had a pot to piss in ( ha ha ha ha!) my old gp used to give me a sample pot to use when I suspected I had a UTI. I forgot yesterday to ask for another one to replace it.

 

By the time I got to the doctors appointment the pain was already decreasing. I felt a bit of a fraud to be honest. Whilst I am typing the pain is ramping up again, I’ve taken pain killers so hopefully it will settle it again. I haven’t got a temperature and today I am not feeling unwell. I don’t feel right – I think all of us with a chronic illness or condition know when our bodies aren’t feeling right. Mine hasn’t felt right for a few weeks, initially I put it down to anxiety, stress, then the heat. But I know in my heart of hearts it’s more than that. It’s like the time I kept telling my old hospital consultant that I felt terribly unwell, I didn’t know what it was but he needed to listen to me. The arrogant twat didn’t, he sent me reluctantly for blood tests. Five days later I got a snotty letter telling me all my bloods were normal. Three days after that letter he had to backtrack because my prolactin levels were stupidly high. See I knew that something was wrong, never ignore your instinct about your health.

 

My urine was dipped and nothing was showing. I then had to get up on the couch and be examined. I knew it was coming, I made sure that front and back bottoms were scrupulously clean as I feared gloved fingers could be inserted into either orifice. Luckily I avoided that one! My stomach was palpated, as is usual the doctors always ask about the scar on my stomach. I’ve had a scar on my stomach since I was 3 and a bit. It’s been there so long that unless someone draws my attention to it I don’t remember it’s there. Now that will probably seem strange as it’s a horrific looking thing all thanks to EDS.

 

If I wasn’t such a lard-arse at the moment I may have taken a photo to show you. The scar runs from around an inch above my belly button to the top my pubic bone. It has healed very wide around an inch or more at the worst places and the skin is paper thin. I also have no sensation / feeling at all in my stomach about 2 inches either side of the scar as the nerves were cut ( I have had multiple surgeries). It’s caused me problems in the past due to burns. A few times I have ended up seeking hospital treatment as I have given myself a serious burn injury and not noticed until the skin has gone black. Like I said I have no feeling there.

 

The scar has also tethered at the end near my pubic bone. This means the scar tissue has adhered to the muscle underneath. It causes me no pain but means my stomach is divided into two parts due to the tethering.

 

I showed the doctor on my abdomen where the pain was, she felt it and I had to be peeled off the ceiling. At this point she told me that she wanted to ring the surgical team at the local hospital for advice as she felt it could be my appendix or it could be an ovarian cyst torsion ( meaning the ovary was twisting because of the cyst). Personally I thought with both I’d be in more pain than I was. I declined the call to the surgical team basically because I hate the local hospital. If I had been in severe pain, vomiting etc obviously I would have gone, I’m not an idiot. But I knew what would happen, lots of tests, no sleep, idiot medical professionals and sent home after being made to feel like a time waster. At this point all I wanted was my bed.

 

I made the doctor a solemn promise that should the pain intensify overnight that I would ring 999 and if it was bad tomorrow (now today) I’d ring them. She wasn’t totally happy but she knew I wasn’t going to hospital. I have to add here that even in that severe amount of pain my blood pressure reached the dizzying heights of 115/80 with a pulse of 95, oxygen 98%. When my blood pressure is normal ( doesn’t happen very often these days) when in pain I am normally in the 130/90 territory. So that just goes to show you how low my blood pressure has been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most doctors take my blood pressure and you can see that they are looking forward to giving me a lecture about my weight and high blood pressure. You can see the disappointment in their eyes when it comes back low! If my blood pressure is below around 115/80 I can be hideously symptomatic, every time I stand up I feel faint. This week I have been drinking expresso’s as it’s the only thing that gives my blood pressure a boost, even if it is only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how I was. That was really kind of her but I feel guilty for making her worry. It wasn’t a quick call either, she had a huge list of questions to ask to ensure I wasn’t brushing her off and telling her what I thought she wanted to hear. This is why I love the small practice I use as they have the time to care about their patients, it doesn’t feel like a conveyor belt. If you need longer than your allotted time then you get it and none of the other patients mind as they also know they won’t be rushed out the door.

 

My plan is when feeling slightly better that I will make a doctors appointment and ask to have this pain investigated. Personally I wouldn’t be surprised if my ovary is stuck to my appendix due to all the adhesions I have.  

 

I’ve been so rough over the last week or so I haven’t done very much in the way of sewing. I tried some hand sewing yesterday but couldn’t concentrate so gave up. Today I finished a Travis bag for one of my Instagram friends. Thankfully that was a quick bit of sewing as I had started it well over a week ago. I can’t put a photo up as she hasn’t received it yet. Jamie will be sending it tomorrow for me. The lovely lady and I have chatted a few times on IG and she asked me if she could send me one of her bags and give her an honest critique of her work, which is a bloody brave thing to do. The bag would be mine to keep. I couldn’t let her just send me a bag, as I knew she had a dog I thought I would send her a Travis bag.

 

This is the bag she sent me,

 

I absolutely love this bag. The quilting is amazing, she’s also used variegated thread so it goes dark and light which emphasises the quilting beautifully. I only wish that I could quilt as accurately as this!