It's a whinge ( sorry )

 It has been a rocky few weeks for me lately. My health hasn't been great, for some reason out of the blue I have had more issues with my neck and it is triggering more migraines. I am waking up in the middle of the night with them or they are building during the day and I am going to bed with them. I bought myself yet another specialised neck pillow in the hope that this would help and to be fair it does a little but I am still suffering with the headaches / migraines.

It is exhausting to be continually in pain, if the migraines weren't bad enough on Sunday out of nowhere I had a really bloody awful flare up of my bowel adhesion pain that caused me to cry out in pain. It felt like I was being stabbed in the stomach. I took all my usual medications to ease the pain and slowly they worked. It was so draining though and it took a good three days for my innards to settle down and not cause issues. I am so heartily sick of these flare ups for no reason that leave me feeling out of it because I am so tired.

I can cope with a lot of things but when there is no let up and it is one health problem after the other flaring up with no rhyme or reason it gets you down. There are so many things that I want to do creatively but have had to stop for the time being because mentally I am exhausted from the high pain levels and wouldn't be able to focus my attention for long enough to avoid making mistakes.

I have been practising self care as much as I can and trying not to feel guilty about not getting the bits and pieces I wanted to get done. I am lucky in some respects as I don't work and I can spend time when I am able doing my sewing / embroidery crochet. I have no deadlines but it doesn't stop the guilt I have when I have spent yet another day in bed or lying on the sofa. Thankfully Dembe loves a cuddle on the sofa and he is more than happy to come up to bed and sleep now that he is that much older. I just get frustrated as none of us is getting any younger and I feel like I am wasting whatever time I have left on this planet by having to rest because I am not well enough to sit at the sewing machine or pick up my crochet hooks.

The fatigue has been off the charts this last week. I know a lot of this is interrupted sleep and higher than usual pain levels. I always feel more tired than usual when my pain levels are not being controlled. I also made the mistake of running out of my Oramorph so have had two days without anything to deal with breakthrough pain. Despite it being the height of summer I have had more hot water bottles than ever. I am so glad that Mr Myasthenia Kid never bats an eye lid when I ask on a very hot day for a hot water bottle. I can't lie I can't wait for 5pm tonight as he is bringing back my Oramorph for me. I might get things a bit more under control then.

Today I am battling low blood pressure, even sat down my peripheral vision is greying out. I am struggling to read as everything is blurry. It makes life just that little bit harder than it needs to be. I thank my lucky stars that both my phone and my Chromebook allow me to make all text bigger, so I can work out what is being communicated.

I really hate the fact that I am moaning but most of the time on social media I don't mention how I am doing at all. I just don't mention my health at all unless someone asks me a direct question and even then I will downplay it. I just hate how hard everything seems to be at the moment. I know it is just a rough patch, everyone has them. I just don't seem to be able to allow myself to have them. It is as if I feel that unless I am doing something I am not worthy of others love / attention / friendship ( **delete as appropriate ). So I take enforced resting badly which then makes my mood dip. I try hard not to let it get to me but I get so frustrated that my body has decided to let me down yet again.

I am however looking forward to the bank holiday weekend and spending some time with my boys as they keep me sane at times like this.

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.

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.

Am I moaning?

I think I am going through what a lot of people with chronic illness / chronic pain

go through where they wonder if they have turned into a bit of a moaner.

Obviously a lot of us have pretty reasonable things to moan about but I am

started to get paranoid that maybe I have crossed an invisible line from

previously what was an acceptable level of moaning to an unacceptable

level of moaning, for those whose lives aren’t blighted by chronic illness.

I usually say very little about my health on social media, its like my own dirty

little secret that most days I am wracked with pain or have ptosis or feeling

anxious or whatever the hell is going on that day. When I do post it’s usually

because things are much worse than normal. I have posted a lot this summer

about my health because things have been the worst they have been for a

long time. The heat wave although helping my joint pain no end made my

PoTs symptoms absolutely horrific. Every movement kicked off palpitations,

my blood pressure was horrendously low in the 80/70 range most days.

Leaving me feeling faint and exhausted. I could barely manage to walk

some days. Many, many days were spent in bed feeling very sorry for

myself. And do you know what? I get very angry  when I feel sorry for

myself because I feel weak and vulnerable.

Regular readers will also know that my CSF Leak has come back, although

its not at the level it was in 2016 I have had several days over the last few

weeks where I have been unable to leave my bed because the pain is so

intense. It makes me want to vomit. I described the pain to someone as

feeling like both my eyeballs had been removed and dipped in acid then

rammed back in the sockets. Whilst the back of my head feels like I am being

beaten to death with a shovel. Now if you were experiencing those levels

of pain do you not think, honestly that you may mention it once or twice?

Or however many times that you want to. Because believe me when you are

dealing with that kind of pain you just don’t care what people think.

Along with the pain the CSF leak brings I have also had some additional

symptoms like vertigo that only goes away with lying flat. Losing my balance

very easily and being unable to bend down / lean forward repeatedly as this

is triggering the leak headache. As I say I am lucky it’s not as bad as it was

in 2016 but it’s bad enough.

In the last few months I have also had my migraines return, I have ended

up having to take amitriptyline every night as a migraine preventer. It’s

kind of working since taking them at the start of July I have had one

migraine. However my migraines have come back as if they are amped

up on steroids, I have to lie in a darkened room, vomiting into my bedroom

bin because I can’t get up.

Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had

an intense amount of pain in my toe. It actually hurt to touch the nail.

I lifted up the side of the nail ( I had both sides removed over ten years

ago due to repeated ingrowing toenails) and the nail came off in my

hand. It hurt but it didn’t hurt anywhere near as badly as it had done

just before the nail came off.

Have I bored you yet? Because believe me I am bored with it. I feel like I

am in a never ending soap opera where shit keeps happening and I have no

control over it. So yes I may have mentioned on social media a few times

over the summer how fucking awful I am feeling and to be fair I haven’t even

touched on about 50% of the health stuff that’s been going on of late. This

is just the stuff I can think of off the top of my head.

Admitting you are sick on social media is a dangerous game, post happy

cheerful stuff and you are judged to be not as sick as you make out. Post

stuff about how fucking awful you feel and you’re moaning. You can’t win.

I don’t want my life to revolve around my health conditions but there will be

periods of time when it does because all I can do is just keep my head above

water.  To feel that I can’t express what is going on in my life, when I can go

weeks where the only person I see or talk to in the flesh is my husband, just

seems cruel. It’s not that I want someone to talk to - and thank you to all those

who have offered me a safe place to vent. It’s just sometimes even I don’t

believe what is going on health wise. I don't think I have ever been completely

honest with anyone because there is always more than one thing going on

with me. I always just give those closest to me the headline news not the

full story.

Any way that’s me, I am bored with this subject already and if I am bored

with it I have probably sent the rest of you to sleep also. Mr Myasthenia

Kid has been on holiday the last two weeks ( well just over ). It’s the longest

holiday he has taken in years. We’ve really enjoyed the time we have spent

together. We’ve managed to work on a few projects together, which I first

touched on in my blog post upcycling.

We had so much paint left that we decided to upcycle our lounge coffee table  

taking it from this - those dots on it are from dog drool

To this

Jay did the lions share of work because I am just not physically able to.

I did a small amount of painting, basically just catching the bits that he

missed. We have painted the stripped pine with hard wax oil which means

the wood is now water resistant and has a lovely finish. It took several days

to dry and for a while we were concerned that the top of the table felt very

rough. However as the hard wax oil has dried its left a silky smooth surface.

Jamie’s work also got the thumbs up from John Scott and Jo Carter on

the Sewing Quarter. I don’t think I have ever seen Jay so proud as when

they both said how lovely the table looked. I am very proud of him as it

was no mean feat sanding the table top down.

Not happy with doing  just the bedside cabinets, the lounge coffee table

on bank holiday Monday 27th August 2018 he also painted our kitchen chairs.

They look fabulous and make such a difference. And we still have paint left from

the 750ml of Scotch Mist Frenchic Furniture paint.

I also got a shout out on the Sewing Quarter Saturday 25th August -

cheers John xx

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 typingthe 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 feellike 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 sheknew I wasn’t going to hospital. I have to add here

that even in that severe amount of pain my blood pressure

reached thedizzying 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   Love this bag!