Recovery is dragging

I wrote last week about the consequences of going out and I clearly didn’t have a clue how bad things would be as I am still suffering after my day trip. I think maybe it is just rotten timing that ever since I have been feeling very tired and run down. This last Monday I ended up with a hideous migraine that knocked me flat on my back for over 12 hours and had Mr Myasthenia Kid have to come home from work to look after me. I am glad I am out the other side of that but it has shocked me how battered and bruised I am still feeling for having a few hours out of the house.

I am guessing having a solid six hour block of socialising, driving a scooter and having to use a lot of brain / muscle power probably wasn’t the best idea. The longest I am normally out for is probably 90 minutes at an absolute push and that will leave me more exhausted for normal for up to two days after. My days when I don’t leave the house are in cycles of rest and activity. I have to pace myself or I end up paying for it. It hasn’t helped that there have been appointments that I have been unable to not attend – ringing up and explaining to the receptionist that you need to re-book because you are shattered never goes down well. There isn’t really a word in the English language that accurately conveys the level of exhaustion because we overuse words like fatigue, shattered, tired etc. For me it gets to the point where I can feel like I am having an out if body experience or that I am dreadfully hungover combined with feeling so utterly exhausted it can be really hard to motivate myself to move. 

I have been on my embroidery machine and sewing machine a lot as I am making Christmas gifts for friends and family. I know it is only October but I get panicky if things aren’t made and then I start to feel stressed which means I no longer enjoy making the items. At the moment I have been limited to an hour or two a day, which doesn’t help me get loads done but it is the longest I can sit without the pain becoming so intense that I have to lie down the rest of the day or concentrate for. Obviously on the embroidery machine when it is stitching out I don’t have to concentrate on anything but I do need to be switched on enough to know what step comes next as for the first time I have been using the embroidery machine to do applique and I am really enjoying it.

I know I should have taken it easier last week but even after 12 years I think I can push it and there will be no consequences. I never ever learn. Maybe I simply refuse to.

This week my body has just thrown a hissy fit and ensured that I can’t carry on ignoring it when it sends out distress signals. Every bloody condition I have is flaring out of nowhere – Hidradenitis Suppurativa two abscesses after at least a month to 6 weeks without anything, Arthritis hands as stiff as can be, Nerve Pain left leg is burning which it hasn’t done in years, Tinnitus (so loud I am struggling to hear anything else) Migraine and now a headache every day since, nausea, IBS, adhesion pain, Muscle Spasms in my back and feet you can always guarantee will make me swear like a sailor literally everything is kicking off at the moment. I always find pain adds considerably to the fatigue. 

This isn’t a woe is me post or an attempt for sympathy, I am just explaining how things are at the moment and why at the moment I am struggling to come up with dynamic or scintillating posts. I am finding it hard enough to follow a conversation let alone put an intelligent blog post into words.

I do count my blessings though, Dembe is my hero. On Monday when I was so sick with my migraine he wouldn’t leave my side at all. I thank my lucky stars I have him as even on the days when I am really suffering and thank goodness they are few and far between he is stuck to me like glue and always makes me smile.

So I promise to attempt to be kinder to myself over the next week and get back on an even keel.

Its that time of year again!

Well what a week, I have been super busy making gifts for family and friends for Christmas, whilst battling the crippling neck pain and yesterday having a stomach upset meaning I was racing faster to the bathroom than Usain Bolt. It wasn’t pretty and it wasn’t fun. It took a good 12 hours for my tum to stop cramping. Anyway that is enough bathroom talk for the opening paragraph of my blog post.

On top of all of that I have woken up with a very sore finger on my right hand. Its one of my typing finger’s so this week is going to be a photo blog , the joint has swollen, I’m pretty sure its my arthritis playing up just for a bit of variety. I haven’t shown you any photos for what seems like forever. So here they are.

Last weekend we decided that we would get the Christmas decorations out. It is a little early for us but hubby is out with work this weekend and would have been too delicate to climb the ladder into the loft on Sunday safely. All in all it took 90 minutes which is pretty good going when you think the dresser had to be stripped and cleaned, all the pottery that was coming off wrapped and packed and all the gorgeous Christmas stuff put out.

I’ve been beavering away making lots of gifts and then I decided why not add to my work load and instead of buying gift bags buy a job lot of plain cotton bags (blanks as they are known by embroidery people! I found that out this week) and thought I would embroider them. That way they wouldn’t get thrown away and could used for years rather than one Christmas ( I always try to save gift bags but many of them don’t make it through until Christmas having been bashed about whilst being moved trying to find other things.) I bought myself some variegated thread as well, so did quite a few using that.

Sorry the pictures aren’t brilliant, these were taken immediately after they were done and needed an iron really. Now they are stuffed with presents. Here are some that I did using “normal” thread and much better photographs

I finally managed to complete Mr Myasthenia Kids advent calendar that I bought in August but had been putting off for months as it had box pleats something I have never done before. To be fair it wasn’t too bad. We are still waiting for a dowel to hang it from the lounge door so it’s in its temporary location here.

I fell in love with this fabric range from Makower , I have a table runner using this design. On Black Friday I managed to pick up some more fabric in this Christmas range with plans to make some cushion covers. At the time I  thought I may get this done before Christmas then as days passed I did start to wonder if I meant next Christmas as there seemed so much to do ( and I kept adding to it). I managed to knock them up today, which I am chuffed about as I had to use my overlocker to finish the seams to stop them fraying so that they will last and last. I made 4, two of each fabric design

I have two Christmas lap quilts that need bound so that they can replace the current quilts on the sofa. I am hoping I will get these done in the next few days. I will be making a scrappy binding using the off cuts from the cushions and table runner and any other Christmas scraps I can get my hands on. I will get these finished before Christmas, even if it kills me! Which I might do.

Tonight I am shattered, I hope that I manage to get some sleep tonight and stop waking up in a blind panic with all the things I need to do – even though I don’t work I find this time of year very stressful. There is so much pressure for things to be perfect even though in reality nothing is. I do have a few things I need to make for other people and I can’t let them down as it will mess them up for Christmas. I am feeling the pressure.

Next week I start physio, I am really hoping that we can make some difference to my neck issue.

Bits and Bobs

Last week Mr Myasthenia Kid was on holiday, so it meant we had to catch up on some jobs around the house that were long overdue. The problem with this is that it leaves me utterly exhausted / in lots of pain when he goes back to work. The work over ran into yesterday so my hands are killing me, so for word count this post maybe a little light.

 

The wood work in the house has been crying out for some TLC for a while. We both hate using gloss paint and over the last 15 years we’ve never managed yet to paint anything with gloss without ending up with dog hair stuck to it. One of the mutts always manages to brush up against it. We have tried quick drying gloss and the same thing happens. So this time we decided to use Eggshell as it would dry quicker, it may not be as hard-wearing as gloss but it doesn’t smell as bad and dries an awful lot quicker.

 

The house we live in was 30 years old last year. Before we bought it the property had been rented out, DIY jobs had been done on the cheap by the landlord and the renters. So the stair bannister instead of being sanded properly before being repainted just had layer upon layer of gloss on it. It was starting to peel off in great big chunks and the paint underneath was various colours which was down to the age of the paint being used. So before we could paint the banister it needed to be stripped of all the flaking paint, in a lot of places that meant taking it right back to the woodwork. I helped where I could but on the day after I had done an awful lot of sanding I ended up feeling horrendous. I hurt everywhere and all I could do was lie on the sofa feeling sorry for myself. I have to pace myself or my body will make me pace myself by shutting down and making it so that I can’t move.

 

Finally yesterday after two coats of undercoat and two coats of eggshell the bannister was complete. I can barely move my fingers today as they are so swollen with having gripped a paintbrush yesterday They are also red and swollen. So today will be a very lazy day today for me.

 

This is the before (taken in December)

You can see that the banister is a variety of colours – this is where paint has been flaking off and I had started it myself and then quickly realised that I would be unable to tackle this by myself due to my health.

This is after – we still have to stain the wooden post tops, we are still deciding what colour to stain them but it looks an awful lot better than it did. I am really pleased with what we have done.

*      *      *

I thought as well I would give you a quick update on what I have been doing sewing wise. On Friday 13th April I bought myself an overlocker, (in June I will be going on a course to learn how to get the most out of it). An overlocker trims excess material with a blade and also finishes your hems in a much more professional way. It can also be used to stop fabrics fraying.

 

 

The following Monday I plucked up the courage to thread it – an overlocker takes anywhere between two to five threads. Mine takes 4, so it has two needles and two loopers. It’s a bit more complicated than threading a sewing machine but it’s not too bad as long as you follow the instructions and just take it slowly. On the Tuesday I decided to make a large box cushion for the dogs wicker basket. I have been meaning to do this for ages but the fabric I wanted to use had a really horrible habit of fraying quite badly. On all the cushions I had made out of it I had to use an overcasting foot on my old sewing machine to ensure that the hems didn’t fray. The overlocker made the job really neat and tidy. I used it to neaten all the edges of the fabric before sewing it together on my sewing machine (using a jeans needle as the material is quite thick as it is upholstery fabric). I finished the back of the box cushion using kam snaps so that it can be taken off and put in the wash.

 

 

I have also been working on some hand sewing and making a quilt using a technique called English Paper piecing. This is where you use paper or card templates and either glue / sew baste ( tacking stitch) the material around the template. Then you sew the templates together to create whatever design that you want. I am using  Octagons and small kite shapes to join them together. On the top I am using small triangles to straighten the top edge and doing the same down one side. My plan is to have 100 Octagons on it and it is for Mr Myasthenia Kids bedroom. I am going to use an old star wars duvet to back it. I am using all my scrap materials to make it and I am finding it very therapeutic to sit and sew in the evenings / afternoons.

 

 

 

I also made the second piece of clothing I have made. A Julia Top, unfortunately it is too big and too short but it was a trial run. I am thinking of turning it into a jacket / cardigan. I used my overlocker and sewing machine to make it.

Sorry this week is a bit of a mish mash of stuff that has been going on over the last few weeks. My mood is still very up and down but it isn’t the crushing lows I have been having and my anxiety is settling down becoming easier to manage. So this week is a week of bits and bobs.

My week in sewing

I am sorry that it seems like it has been months since I have written a proper blog post. At the moment I just have lost my ability to put pen to paper, there is nothing currently firing me up, making me want to speak passionately about it. Other than sewing, nothing (other than hubby and my dogs, friends) brings me a great deal of joy. It’s understandable you don’t experience that amount of bereavements in such a short amount of time and escape unscathed. So I am trying not to be too hard on myself and just produce what I can, so that you my loyal readers, some of you who have been around for the last ten years don’t lose faith.

 

At the moment I have been sewing like a woman possessed. It is the only thing that I can lose myself in 100% is sewing. I usually start with the radio on but at some point just zone out and no longer hear it.  I live for sewing at the moment it is all consuming. Even my Emma Bridgewater collecting has started to take a back seat as I am so focused on sewing.

 

I have made quite a few bits over the last week, unfortunately some of them are gifts for people who may read my blog so I can’t post the photos. I will post what I can though!

 

Last week I forgot to post this photo of my spring wreath that I made.

 

I also started my first ever quilt. I am using a kit which is called quilt as you go. So each block is built up individually. Once all the blocks have been made you sash them together and then bind the edges.

 

 

 

 

 

Hot water bottle cover, which is a gift for someone I know doesn’t read my blog or do much online!

 

Quilted mat for sewing machine to sit on

It’s been quite a busy week sewing wise. Today I am having a non sewing day as my hands have swollen up making it quite painful to bend my fingers. A day of rest will hopefully sort it all out.

Winter Lurgy

I have come down with a winter bug and I am feeling pretty rank. Really hot, itchy sore throat, blocked nose and aching all over. So I am not up to writing a blog post this week, so you have my apologies. I should have written it earlier but was enjoying having a couple of reasonable days and left it until the last minute – Wednesday.

 

So instead of a post I will share a couple of photos with you that I have taken over the last  week.

All three dogs waiting for Jay to share his food with them.

Mollie sleeping with her new ball to stop the kids stealing it.

 

Our Dresser has been changed over for Christmas, to all our Xmas Emma Bridgewater Pottery.

We bought some tiny lights to put on the dresser which looks fab in the dark evenings.

I did manage to spend some time making som Star Christmas Tree Toppers. I have also managed to sell one which made me feel immensely proud.

Trainspotting (or a bit of a cock-up by me)

 

You know your life is a bit sad when you manage an almighty medication cock-up and see the immediate silver lining as being “well at least I have a blog post for next week”. Such were my first coherent words to my husband this morning after a night of sheer hell. All because I fell asleep ridiculously early and then forgot to take my medications, one of which is morphine.

 

I take morphine twice a day as a 12 hour slow release tablet. Before morphine I couldn’t get out of bed and had been stuck there for the majority of the time for several months. This was thanks to a dr who decided it would be a fantastic idea to have me walk the length of a hospital corridor. Whilst I managed it and may have seemed ok to her, the following day the repercussions were felt throughout my body. I had a flare up of bursitis in both hips, plantar fasciitis in both feet, my knees throbbed and my back felt like I had been trampled  by a horse. I worked my way through every other non opiate painkiller before both my doctor and I conceded defeat, there were no options left. At 37 I wasn’t prepared to spend what will hopefully be a very long life in that amount of pain on a daily basis.

 

In all the years I have been taking morphine (for the pain caused by having EDS and the early onset arthritis I developed because of it) I have never missed a dose. Over the last 6 years I have on occasion been a few hours late with no problems. I have always attempted to educate those who read my blog (if they don’t understand) the difference between addiction and dependence. An addict uses drugs to get high, someone who is physically dependent on morphine is using it to relieve pain. I have never got high and if you bumped into me in the street you wouldn’t know I took morphine.

 

However the results are the same for the addict and those physically dependent on a drug, if they miss a dose. The body goes into withdrawal. I am now 12 hours past the time I realised I had gone into withdrawal and I still feel like shit despite taking my morning meds. I am hoping tomorrow I feel better and my body will be more settled. Let me also tell you this, as long as there is breath in my body I will never miss a dose again.

 

I wrote in last week’s blog post that I went to the doctors, I was exhausted for the rest of the day. At 18:30 (yes I do know how rock and roll I am) I went to bed. It was too early to take my night time medications which I take between 19:00 -20:00, so I thought to myself, “no worries I will take it later”. I then promptly went to sleep, which I never expected to do. I thought I would listen to the radio and then take my tablets after The Archers had finished at 19:15. I didn’t hear The Archers, in fact I don’t remember hearing much of anything I just conked straight out.

 

I woke up at 21:30 drenched in sweat, now there is nothing unusual in that, I can suffer from reactive hypoglycemia. I even worked out in my head that the night sweat would be in line with it happening within 4 hours of eating. I was so tired I just rolled over and went back to sleep again. I then proceeded to wake up at 22:30, 23:30 00:15 01:30, 02:15 and then finally at 03:00am. Each time I woke up I was absolutely drenched in sweat feeling both boiling hot and freezing cold at the same time. On each awakening I was also feeling more agitated, panicky and nauseous. I thought I was coming down with the flu or something. I had also had to change my pyjamas 3 times and turn my duvet over twice as it was soaked through. I was still at this point blaming reactive hypoglycemia but knowing in my head that the time frame for this to occur had passed.

 

It wasn’t until around 03:20 when Willow knocked my pill-mate (box that divides pills into days/ mornings/lunch/ tea/ evenings) off the bedside cabinet and I turned the bedroom light on to put it back, that I realised Wednesday evenings pills were still sat in their compartment. I checked my mobile phone to see what day it was. My first thought was “shit, no wonder I feel so awful” then it was “what the hell do I do?” I was 8 hours past the normal time of taking them but 4 hours away from when they should be taken. I really didn’t want to mess up the times I take my meds. So I opted to take 10mg/5ml Oramorph and 10mg slow release (from a larger dose) out of my morning meds, to see if it would stop the withdrawal I was experiencing.

 

I tried to go back to sleep but I was still hot and cold at the same time and dripping with sweat. I decided to get up and have a cup of tea in the hope it would make me feel better. As in the half hour I had been tossing and turning I’d had to get up twice for a dump. (I know I am such a lady but that’s what opiate withdrawal does to you and it’s not pretty.) Jay was up when I got downstairs and I was in such a state I could barely speak. I was feeling really nauseous, agitated and angry. I was just praying that at some point the morphine would take the edge off. But as luck would have it my stomach was on a go slow and absorbing my medication really slowly.

 

At 6am I felt like I had the full-blown flu, I was sweating buckets and still feeling like I was burning up whilst be freezing cold at the same time. The nausea was getting worse and I was convinced I was just going to puke all over the lounge floor. I was counting down the minutes until 7am when I would be able to take my morning tablets. It took until 10am for me to feel anything like human again, even then though my pain levels were really high and I was exhausted.

 

For the remainder of the day I felt pretty grim, body aches, no energy, I felt really tearful and out of sorts. All day long all I could hear in my head was the song from the film Trainspotting Lust for life by Iggy Pop, which did make me giggle. Especially when I would catch myself singing it every now and again. I went to bed really early again but set an alarm on my phone to remind me. I was so determined not to go through the same thing again I couldn’t sleep until I knew I had taken my pills.

 

I have a set routine normally when it comes to taking my meds, normally if I go to bed early I set the alarm on my phone so it wakes me up. That night I was so tired I couldn’t even think straight. Also I am good at setting the alarm on my phone and then just turning it off when it sounds and not taking my meds. That is what normally happens when I fall asleep early and this is what has happened all the times I have taken them late. Jay would normally come in and check that I have taken them but he was also shattered that night and forgot. He also hates waking me up as I can be thoroughly evil when woken. Thrashing around thinking I have been attacked or being verbally abusive due to being semi conscious. So it’s hardly a nice thing for him to have to do.

 

I am now forcing myself to stay downstairs until just before 19:00 so that I don’t fall asleep before I take my pills. I never, ever want to end up in that situation again . Even attempting to put into words what my body felt like doesn’t even come close. It  took 24 hours for me to feel fully back to normal and for my pain levels to come down to normal. Mixed in with feeling shitty was also the anger at myself for forgetting to take them in the first place. I don’t mind if I make myself sicker than normal for a few days due to enjoying myself but to make myself sick through something entirely preventable made me seethe. The old negative self talk really kicked in, I didn’t have a nice word to say about myself. It was just so incredibly frustrating.

 

So I shall leave you with the track that has haunted me ever since Iggy Pop’s Lust for Life