Sabbatical

I have decided to give myself a sabbatical, it is quite rare these days that I take a break from blogging but I feel like I am juggling so many balls in the air at the moment that I need to just step back for a bit and allow myself to just be. So the next blog post after today will be posted on 14th November 2019.

I have a crazy couple of weeks happening and I seriously don’t know when I will find the time to blog and do it to a standard that I am happy with. I will still be doing The Dembe Diaries during this time, which you can find here, that is published each Monday morning and lets you know what Dembe has been up to the previous week from his training to his general antics. As that is just a straight forward copy of the paper diary I keep it requires no brain power! 

Next week it is my birthday, followed by hubbys. We then on the following week have a myriad of medical appointments, I have the dentist and my check up at the eye hospital and then a trip down to see our parents. I know after those three days I will be wiped out and I don’t want the pressure of worrying about producing a blog post. 

I also have a mountain of Christmas presents to make and I am getting stressed / panicky about not being able to achieve it all. I know in reality I will and if I dont we can buy gifts. But I had my heart set on making everything. So by taking away the pressure to produce a blog post for the 31st October and 7th November just gives me a bit of breathing space.

I am also trying to practice what I preach and ensure that I start putting myself first for a change. I tend to put my own physical and emotional needs well down the list of priorities and get so surprised when I am burnt out or suffering from migraines / a flare up of PoTs symptoms. Sometimes you just need to cut down on what you are doing or how thinly you are spreading yourself around. I don’t mind all the sewing I have to do as I enjoy that, I just can’t be the one picking up the pieces for people who don’t give me a second thought when I am no longer present. I have cleared away the negative and have decided that moving forward the moment I feel taken advantage of I will say. Rather than bottling it up and exploding at a later date.

Things have to change so from now and especially from 2020 I have decided

Far too many times I see people especially women filled with the belief that they aren’t good enough because of the way they are made to feel by others. If anyone makes you feel like that then they aren’t good enough for you. 

On a happier note Dembe swam for the first time last week and Mr Myasthenia Kid managed to capture it on his phone.

I was so proud of our baby. He has always loved water but he has never been brave enough to swim until last week. I wish I could have seen it in person, c’est la vie!

Anyway that’s enough of me rambling, I shall be back in a fortnight. Hopefully with more energy and lots to tell you. Until then take care of yourselves!

 

Life Laundry – moving on.

Me and Travis

 

I don’t know what it is about October but it seems to be a catalyst for me to have a look at my life and change things. Remove those things that are causing me unhappiness / hurt. To assert myself and decide that those who do not treat me with respect will no longer have that option. I have no idea what makes me so brave in October, maybe it is because it is my birthday the following month? Is it because I don’t want another year of feeling unhappy, unworthy, stressed out by people or things or events? Maybe I just don’t want another birthday where I compromise and don’t put myself and my happiness first?  October as I have written about before is a month of sadness for me, even more so this year as it is full of anniversaries now of dogs and people I have lost. 

First it is my Grans birthday, I miss her more than I imagined I would. That may sound strange but for much of my childhood she was someone I spoke to on the phone and perhaps saw twice a year as she lived at the other end of the country. I stupidly believed that life would continue on as normal when the time came but I have to admit there have been so many occasions that I have gone to ring her and realised that she is no longer here. She would have loved Dembe, she loved dogs and told me on more than one occasion that if she had owned Buster ( her dog ) first she would never have had children. I miss her sense of humour and Jamie’s face when he tried to speak to her on the phone but struggled due to her Aberdonian accent.

The following day it would have been the babies – Frankie’s and Willow’s 13th birthday. I wasn’t really conscious that day due to the hemiplegic migraine I came down with. I knew it was coming and I was feeling sad so I do wonder if both those anniversaries triggered or played a part in triggering the migraine. It wasn’t something either of us was talking about it was the elephant in the room. Plus that birthday is shared by our niece who was celebrating her 30th birthday which left us feeling ancient. She was just 8 years old when I met Jamie. 

Today 16th October Dembe celebrates his 11 month birthday. He has celebrated in style this morning by having his very first swim in a pond on the common. He has been really funny about water outside of the home, he leaps over or avoids puddles at all costs. He would barely get his feet wet by paddling in ponds when very small and ran away from the sea when we took him down the beach.  So to hear he has had a swim is really funny. Unfortunately Jay thought he had videoed the event on his phone but when he came back to show me, he had taken about 1 seconds worth of footage. It’s not the end of the world Dembe will probably now be a regular swimmer and Jay will take better footage. 

I’m glad that it is only this year that we count the months of Dembe’s age. As our first dog Travis passed away on 17th October 2006, 13 years ago and in all those years there is not a day that goes by when he doesn’t pop into my head. Of course I know that the chances are that he would have passed away by now but to lose a dog before his 3rd birthday is a unique kind of hurt. When you get a puppy you expect to have at least 10 good years with them. Believe me those ten years fly by. If you get longer, which we have been incredibly lucky to do with Mollie ( Travis’ sister), Frankie and Willow, (Mollies children), the loss isn’t so hard to bear. Its tough believe me especially losing Frankie and Mollie within 7 days of each other. I have said it before and I shall say it again, I thought I would drop dead from the pain of it all. However the pain you feel when they don’t reach that milestone of ten years is a pain like no other. I don’t think I will ever be able to say that the pain has truly gone.

October 25th marks Travis’ birthday, we first saw him when he was three days old. At that point we had no idea which pup would be our boy but his name was already chosen and we were so excited already that we were having problems sleeping. It seemed such a grown up thing to be doing, even though we were both 29! Three days after his birth on a Tuesday we moved into our home and have been here ever since. I can’t believe it has been 16 years already, it still feels like it was just a few years ago. But the little boy two doors down is now coming up for 21 and works and the same place hubby does.

There doesn’t seem to be a week in October that doesn’t hold a significant anniversary. For years I always used to hate October, I would start to feel down the minute the clock struck midnight on October 1st. I would just feel sadder and sadder until the 17th and then I would spend that day blubbering on and off, trying to deal with the overwhelming grief that I felt over losing Travis. Some years are easier than others. Last year it was a terrible day, I sat on the sofa all day crying being comforted by Frankie not realising how little time I had left with him. This year it doesn’t feel so bad. Probably because we have our little ray of sunshine Dembe to keep us on our toes. He is such a happy dog it is pretty impossible to stay sad for more than a few moments as he will do something that will either melt your heart or make you dissolve into fits of laughter. I also think after going through that double loss at the start of the year all other grief / pain pales into insignificance.

Whilst October has for many years been a sad month for me, it also has become a significant milestone for my friendships. I am an extremely loyal friend who will fight to the death for you. I am the place you run to when you need help or comfort. Wrongly I put you before me and sometimes individuals take advantage of this and abuse my friendship. I don’t deliberately ever plan to sit and take stock of my friendships at this point in the year. It seems to be something that happens. I think it is because with my birthday the following month I think to myself “would I want to spend my birthday with this person?” Would I feel comfortable accepting a gift from them knowing how I feel about them?” I normally just look at the people I have been moaning to Mr Myasthenia Kid. He will tell me quite honestly if this is a conversation we have had many times before. He will ask me “if next year will we be having the same discussion?” Some years I do nothing, I soldier on determined to make the best of things as due to my health conditions friends who come and see me are in short supply. I do have wonderful friends on Instagram and Facebook but sometimes you need to actually speak to someone, share physical space with them. If it has got to the point where I don’t want to spend time with a person and would rather spend days on end alone then I know it is time to move on. Be it a friendship of two years or twenty. I have no desire to flog a dead horse. I won’t beg, I won’t demand, I just leave and move on with my life. I have done it before, I will probably do it many times.

I don’t expect much from friendship, I certainly don’t expect to be the centre of your universe, we all have our own lives and all the demands placed on them. I do expect to be more than an afterthought. I do expect manners, loyalty and respect. I also like communication, conversation that is two way. I will hold my hand up and admit I can be crap at remembering to message people but I do make an effort for those who I consider in my  close circle. I will always be there for my friends like they are for me. 

To be fair it’s not just my friendships that have come under scrutiny in this life laundry. I have done a lot of sorting out of clothes, belongings etc Donating a lot to charity as both hubby and I are on a diet and so much of our clothing has become tent like. I have been taking a look at each room and trying to reduce the clutter. It seems again to be a pattern of mine in October! probably because I want the house looking nice for our birthdays or Christmas.

As a friend told me its Life Laundry, as in it’s a spring clean of relationships. You get rid of the crap and the unnecessary. As she said “it’s tough but necessary” and she is right. You shouldn’t cling to things that no longer make you happy.  

I already feel so much happier and uncluttered. Even though there is a huge anniversary for me tomorrow I am not facing it with the usual dread.  It is time to move on.

Frankie

 

Mollie and Willow

 

Gran & me

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.

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.