Empathy

When I wrote last week’s blog post Rainbow Bridge  I never expected in a million years the response that it received. It wasn’t just me hubby had people coming up to him in work, telling him that they couldn’t read it without shedding a tear or that it said what they felt but had never been able to express it. I had followers on Instagram contacting me about their recent losses and long ago losses too. On Facebook it was the same, with many people contacting me or leaving a comment. . It was emotionally hard as I am very empathetic, so when people start to get tearful when they are talking to me, it makes me cry too. But when I wrote the post I was half expecting it to stir up a lot of emotions because I had been in such a mess as I wrote it. I have to be honest I never did a final check on the post to look for errors, mainly because I found it so upsetting to read, it was real and raw. I haven’t even gone back to look at it now to refresh my memory before writing this one. I just can’t do it, I have already been in tears today twice over the dogs. It is always just bubbling away under the surface for me at the moment, although to look at me or to see any of my social media posts you would never know.

I am so touched that something I have written has moved so many people. I thank each and everyone of you who commented or messaged me. It was very hard last Thursday as I had no idea how it would be received. I had no clue if people would think I was wallowing, being self indulgent or a drama queen. That people would think that I should pull myself together and get on with the rest of my life. I promise you I am not self indulgent, wallowing or being a drama queen. I just write about life and my experiences. I try to give a voice to those feelings that we push down and don’t let anyone else see. I take a chance that people won’t reject me or ridicule me because I try to talk about things that many would rather brush under the carpet. Although there have been several articles regarding the death of a pet in National newspapers it is still treated with some degree of disbelief by those who have never had an animal / pet in their lives. 

The whole point of my post was for you – whoever you are, know that it is ok to feel whatever you are feeling, to express your grief ( and it is your’s and no one else’s) anyway that you like. That these feelings are totally normal. You are not weird, you aren’t wallowing in your grief, you aren’t an attention seeker and you are certainly not being a drama queen. You are hurting and it will take time to process all that emotion. Hell I am only 8 months on and there are days where I can barely keep it together. Days where all I do is cry. Days when I feel guilty when I know rationally I have absolutely nothing to feel guilty about. I just wanted you to know you aren’t going mad, I honestly thought at times I was losing it. All of those feelings, even the uncontrollable rage that even surprises you when you roar, is totally normal. It is the beast called grief and it doesn’t have to be something that you go through alone.

As I touched on in my blog post even when you have suffered from a significant bereavement such as a partner / child / sibling / parent / friend, people who haven’t been through that kind of grief can’t begin to imagine the enormity of the feelings of loss and pain. They may see you red faced, tear stained and see your grief but that is soon forgotten because it has no direct impact on their lives. The next time they see you, taking the kids to school, going to work, getting the shopping – all things you have to do despite the pain and grief they assume you are “better”. They don’t understand that grief goes on forever. They seem to think that grief has a timeline and by a certain amount of time say 6-12 months maybe sooner if they are real dicks, you “should” be “over” it. How do you explain that there is no getting over it? You are just getting through each day the best you can. There will be good days, bad days and the worst kind of days.  Life will probably never be the same again. But there will never be or has there ever been for anyone who is grieving a time when they are over it. Getting Over It has to be the most grotesque phrase ever. Followed by Time is a great healer. There is no healing from grief, you carry that pain forever.

I had people contacting me about dogs they had lost thirty years ago during their childhood that they still mourned for.  Others told me about their recent losses that they just couldn’t process or that in the proceeding days before my blog post it had hit them, after thinking that they could keep going and carry on as normal. I was quite honest when I spoke to them and told them Jay and I have very little memory of January and February this year.

 We know we got Dembe, we know he was tiny but ask us to recall anything significant like where we took him on his first walk. What the date of his first walk was, his first bark, his first growl all the stuff we would normally remember and we draw a blank. It’s not because we didn’t care about it, purely our brains were overloaded processing what had happened when we lost Frankie and Mollie within 7 days of each other. I am so glad that I started the Dembe Diaries blog and his diary that I base the blog on, so that in years to come I can look back and see all those things in black and white that my brain was unable to absorb at the time.

 I do remember Jay barely spoke in the first 4-5 days after it happened. It was quite stressful as I went into list mode, trying to control everything because my anxiety spiked. His anxiety spiked because I was making so many demands on him all the time and obviously he needed to have some control in his life too. It was very difficult trying to get him motivated to help me sort the house out ready for Dembe’s arrival. Especially as we couldn’t stand being in the house as it was just full of reminders of how empty it was. We did cry together and we did talk about our babies, all of our babies. But the pain and grief was hard because although it has happened to both of you (or all of you) it is also an individual thing that no one can make better or take away from you. People grieve in different ways. Just because Jay wasn’t breaking down in tears every 5 minutes like I was didn’t mean he wasn’t hurting or struggling to cope. You only had to take a look at him, ashen faced, tired and so very quiet, grief and pain was written all over him. For a few days I was worried that he was going to drop down dead from a heart attack or stroke he looked so ill.  

Grief is weird one minute you can feel like you are doing ok and the next minute it feels like the world is imploding. There is no rhyme or reason to it, you are carried on its current and it takes you wherever it pleases. There is no control of it, it controls you initially, even denying you sleep when it wants to. Both Jay and I suffered from terrible insomnia in the 7 days after Mollie and Frankies passing. We would find ourselves downstairs in the middle of the night watching crap on the TV whilst eating chocolate biscuits and drinking sugary tea in the hope we would just pass out from a sugar overdose. I remember one day within about 20 minutes of each other we both left the electric shower on, when we left the bathroom, returning to it a few minutes later, neither of us could work out why we had left it running. We had no recollection of leaving the bathroom.  Life really was being lived on autopilot, all we could do was keep putting one foot in front of the other and get through another day.

I want to tell you that things do get better, the grief becomes less overwhelming.  I feel like I am finally starting to live life again instead of just simply going through the motions. I am not saying that in 8 months you will also be feeling better, it could be less time it could be substantially more time. But there will come a time when you let a breathe out and know that you are starting to be you again.

Up until about a week ago the last time I listened to music and enjoyed it was 29th December 2018. That was the day that Frankie passed away and I had been listening to my Sinead O’connor LP. I didn’t play any music for a couple of weeks. After that time had passed, I tried but I found the noise too much and overwhelming. I had no emotional connection to the music. I would rather be in silence or have the TV on low in the background.  For the last two weeks I have played music non-stop. I have sung at the top of my voice and quite possibly scared the neighbours. I have found the joy in music again. I haven’t played my Sinead O’Connor LP, I think that one will take some time. I may not play it again for several years, I’m not setting myself a target, I will let it happen, I won’t force it. One day I will sing something from the album and it will be like an ear worm that won’t die until I play it. At the moment anything from that LP makes me sad.

We have also started planning things for the future. We have booked  a short break in the UK next year and we will be taking Dembe with us. It is very exciting. This will be the first time since 2006 that Jay and I have had any sort of holiday. It is only 3 nights away but it will do us all some good just to get out of the house and away from the day to day. I am nervous as hell as I have become a real homebody since becoming ill. Other than stays in hospital I haven’t been away from the house in 13 years. It is hilarious to me that I am getting a bit anxious thinking about it when Jay and I have travelled to Sri Lanka, USA (Florida), Antigua, Paris, Menorca and various places all over the UK for weddings / christenings. I know that we can do it, it is just my world has been so very small over the last 13 odd years.

So please be kind to yourself, wherever you are in your journey with grief. Everyone does grief differently, there is no one size fits all. What works for you may not work for anyone else.  Remember living life does not mean that you have forgotten those who are no longer with us. At some point things will get easier, you will reach a new normal. It is not a journey you have to do alone. If more of us start talking about grief and how it affects us we will educate those who have never experienced it and maybe create a little more empathy. The world could really do with more empathy at the moment.

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Lifes a bit shit at the moment

Life’s a bit shit at the moment, I find quite often it goes like that. You can be on top of the world one day and thanking your lucky stars about how sweet things are and then the universe finds out and pulls the rug out from underneath you.

 

I am normally quite honest with my readers but this is stuff I can’t and won’t discuss for the time being. Rest assured hubby and I are fine as are our babies ( Mollie and Frankie). Its stuff outside us our little bubble that is impacting us. Its having a massive impact on my mental health as in my anxiety has spiralled out of control again, I feel constantly that I am on the verge of a panic attack if I am not 100% distracted.

 

I hate holding stuff back as I like to think above all else I am honest with you but it’s not my story or my life. The people in my bigger circle deserve their privacy and I will always respect that.

 

On top of this the heat has suddenly got to me. I can’t move without palpitations, I am feeling faint and generally exhausted. I would be very happy for a few cooler days just to give my body a rest and get things on a more even keel.

 

Due to everything that is going on at the moment not a lot of sewing has taken place. I have lost a bit of my sewjo, I have managed to get three bags started for friends and hopefully they will be completed this week. I just need the space and time to be able to do this, thankfully they are all very understanding and know that I can’t work to tight deadlines as I never know when my health will let me down. The mind is willing the body says nah!

 

I have decided to name my little dog walking pouches The Travis Bag,  after our first Weimaraner, who brought such love and joy to our lives. He loved his walks so I think it’s apt that these bags are named after him.

 

Bl**dy Ears!

 

For the last few weeks I have really been suffering with dizziness, I haven’t really said a lot about it as I hate being a negative Nellie, I don’t want my blog to be me always moaning about my health but sometimes things are a bit shit and that’s what its like at the moment.

 

I had a cold a while back and I knew it had messed up my ears as they started to feel very blocked. When I went to the dentist a few weeks ago I could barely hear him when he was talking to me as I was so deaf that day. I have been taking stugeron (cinnazine) like its been going out of fashion as the dizziness has been so bad I have been falling over. I feel like I have water trapped in my ear and some days the dizziness is so bad I can barely move until the stugeron has kicked in. This morning I asked Mr Myasthenia kid to pop into the doctors and book me an appointment. Thinking I would probably get an appointment in the middle of June, so imagine my surprise when he rang to tell me I could be seen this afternoon at 15.30. I needed to go anyway as I needed to see if they would give me some diazepam to calm me down when I see the dentist – which they did.

 

At the appointment there was also a student doctor present. Apparently they don’t really get a chance to look in ears until they do an A&E placement – with little kids shoving stuff in their ears and up their noses or if they elect to do an ENT placement. So the student doctor had a look straight after the doctor did. That was quite good because the student doctor had to then explain to my gp what she had seen, so I got to learn a little about what was going on in my ear. Apparently my left ear the good ear is entirely normal however my right ear is very dark, light should bounce back in a healthy war. But as I have fluid trapped behind my eardrum it makes my ear a dark place. So for now I have to use my nasal spray religious for the next month. If that doesn’t clear it then I have to go back and get stronger steroid drops…..if they don’t work I am looking at the possibility of grommets again. The problem with fluid trapped behind the eardrum is that it F**Ks up your balance and hearing – it makes me feel very ill. It also puts you at high risk of getting an ear infection. Sometimes my ear is very painful with it, most of the time it isn’t painful at all. I would just like the constant feeling of water in my ear to do one now as once you acknowledge the feeling it’s very difficult to distract yourself from it.

 

I have had a couple of days where the dizziness has been unbearable and one day last week when I ran out of stugeron. Thankfully my dad came to the rescue and dropped some in to me. When it’s bad I can’t do anything until the meds start working, I have to lie or sit very still. If I can’t take stugeron ( as I have run out) then it will just get worse and worse until I can’t stand up without being sick or falling over. I find this incredibly debilitating. I know I have quite a catalogue of things wrong with me but there are just a few I really struggle to cope with, CSF leak(s), full-blown migraines and this. Everything else is a walk in the park compared to these three, Anything that prevents me from being (almost) normal, I really struggle to cope with.

 

Thankfully the dizziness does reduce significantly when I use stugeron, it would be much worse if I got no relief. I have been able to do stuff over the last week on the sewing machine. I finished my kimono and I am 90% happy with it.

I also started working on a WIP (work in progress) that has been hanging around for a while, I hate having unfinished projects hanging around the place. So last week I decided to finish the patchwork part of a quilted wall hanging.

The wall hanging involved quite a few 2 1/2 inch half square triangles. 32 to be exact, it’s the most I have ever had to make.

These then had to be trimmed down to ensure they were the correct size, something I always struggle with.


This was it almost completed just the borders to go on. One of the most difficult things I have made and I became acquainted with my seam ripper!

This is it with the borders on. I now need to quilt it, currently it is draped over the top of my sewing machine with wadding / batting and the backing pinned and glue basted on, waiting for me to decide how I will quilt it and what pattern I will choose. Its 24 inches square so not a small wall hanging. At least I know where it is going once it has been completed. If you had asked me Friday or Saturday I would have told you it was going in the bin!

I also managed to knock up this box cushion dogs bed for Frankie to sleep on in Jays room.

I bought the sheep material a while ago I love it. The bed has been filled with foam from an old bench cushion that has been in my loft for a few years and some old throws. It is much bigger and softer than his previous shop bought bed and he can really stretch out on it.

Due to the fact I have been feeling quite grotty with my ears I have also had days where I have been taking it easy and using the time to do some slow sewing. I have been making an English Paper Piecing quilt for Jays room. This is my progress so far

 

I managed to get so much done that I ran out of the little kite shapes that sit between each octagon.  So I had to make some more of those as well.

I took my slow sewing down to the doctors with me today, just as well as I was waiting 45 minutes for my appointment!

Let me just say it  – Bloody ears!

Too Darn Hot

I’m just going to break rank and say it, something that us Brits are known to do which is to complain about the weather, here goes……..It’s too darn hot!

 

Now for those of you who experience really hot temperatures in the USA or Australia for example must be laughing your heads off, as our heat wave temperatures are nothing compared to yours. Most temperatures in the last 6 days have been above 30 degrees celsius (86 fahrenheit), this is a rare (ish) event in the UK with average June temperatures normally being around 21-24 degrees celsius (69.8-75.2 fahrenheit). It’s also all about what we are used to and we Brits are not used to this at all.

 

I have been suffering since last Thursday as my blood pressure decided the best thing to do when faced with this heat was crash. When I eventually bothered to measure it, the first three times my blood pressure monitor read error, which means it’s too low to read. When I did get a pressure (probably because I was getting stressed from it not measuring it) it read 83/50. No wonder my heart was going like the clappers every time I moved let alone went from sitting to standing. I ended up spending one day in bed, whilst I waited for my medication to kick in. I had to re-start taking midodrine, a medication I don’t like taking because of the awful side effects I get with it but nothing on the side effect front compares with not being able to stand without fainting. At the moment it’s a case of the lesser of two evils.

 

It’s not just me that is struggling with the heat at the moment, my poor pooches are miserable with it. On Monday afternoon I was very concerned about Frankie, as although we had been inside all day he started to seem quite agitated, he started pacing and panting very heavily. Thankfully there had been lots of information shared on social media and I suspected he may be starting to suffer with heat stroke. I immediately started wiping a wet cloth over his belly, Weimaraners are pretty much hairless there and then I poured cool water over his back. He stood there and let me do it, which is most unusual as unless it’s a really muddy, yucky puddle on a walk he won’t go anywhere near water.

 

On Tuesday I decided from around 11am onwards that I would cover him in a wet tea towel

 

 

 

And that worked a treat he was much happier. The girls however were a nightmare and point-blank refused to have anything put on them. As soon as I put a wet tea towel on them they would stand up and shake it off. So I decided to make a bandana type thing for them out of wet tea towels. As they have quite big necks it took a couple of attempts to get enough slack in the tea towel so I could tie it safely around their neck.

 

 

 

 

So the above photos show you how I folded the tea towel to accommodate their neck size.

 

They will tolerate these, it’s great as you can just take them off and get then get them wet again whenever you need to. Plus they can wear them when out on their walks and it helps to keep them cool.

 

The wet tea towel bandana dog fashion as modelled by

 

Mollie

 

Frankie

 

Willow

20 Things about me

As it is the Easter holidays and here in the UK the weather is glorious for a change, I thought I would just do a short blog post today. So here it is

 

1. I am 43 years old but I am staying 40 until my 50th, if anyone asks!

2. I am married to Jay and have been for nearly 17 years. We have been together over 20 years

3.I own three Weimaraners

Mollie

Willow

Frankie

4. Jay and I got married in Sri Lanka. Its our dream to go back one day.

Sri Lanka

5. I have Ehlers Danlos Syndrome hypermobility type

Prayer sign

6. I also suffer from PoTs – postural orthostatic tachycardia syndrome / severe autonomic nervous system disorder

7. I have a degree in History.

8. I collect Emma Bridgewater Pottery and have also managed to get my husband into collecting it too.

 

9. On the 29th March this year as I accompanied hubby in the car on his way to walk the dogs, we came across a man playing the bagpipes in the carpark

 

10. I have been vegetarian all my life but this year have become what’s known as whole food plant based, which is essentially a vegan diet that is very low in oils / fats and no processed foods.

Tofu “chickenless” fingers

 
11. I love posting photo’s on Instagram and I also love seeing others photos. You can find me @racheljillmorrismcgee

12. Emma Bridgewater’s social media team have contacted me twice now for permission to use my photo’s in their social media campaigns

 

13. I am very lucky that I have a great group of friends that keep me going when things get tough. I know many people who have chronic health conditions that don’t have the support network I have so I am truly grateful for this.

14. I am currently teaching myself to draw after a break of nearly 30 years. It’s hard going as I struggle to grip a pencil for more than a few minutes at a time. So a twenty minute lesson can take me days to complete. I am really enjoying it though.

 

15. I have been blogging since 2008 but didn’t  blog regularly until a couple of years ago. I have written more than 300 posts.

16. Despite being a blogger and talking about all aspects of my life I am quite a private person.

17. Hubby and I used to breed Weimaraners, Mollie has had two litters of pups with nine puppies in each

18. I love listening to the radio but I don’t listen to music channels. I love Radio 4, Radio 4 Extra and The World Service. On a Sunday night I will also listen to Radio 3 if they have a play on. The radio became a massive part of my life when I first became ill as I would spend hours in bed resting as I was so exhausted all the time. Radio was one of the few things I could do.

19. As I am a massive radio listener I am also a big fan of the Radio 4 soap The Archers about a rural community in the made up village of Ambridge.

20.  My favourite place on the planet, other than my home is Woodbury Common.

Woodbury Common

#5 a comedy of errors

On 31st October I made yet another trek to the hospital for caffeine infusion number 5. They do work and give me a little relief from the awful pain that is being caused by the cerebrospinal fluid leak. The results of each infusion is different, sometimes I get complete relief from pain for several days other times it is just a few hours. This time it was just hours, with the pain knocked down the pain scale for the following few days. Alas it is starting to increase again.

Although the infusion had been planned meaning I didn’t have to make numerous phone calls to get it booked in, the word disaster would cover it quite aptly. We arrived early, hubby, Sharon (my hospital buddy) and I at 9:30am, my appointment was 10am, so when the nurse ushered me straight through to get the cannula set up I was pleased as punch believing the infusion would be under way quickly and we would be able to get home soon. How silly of me.

We were greeted by the nurse that had an issue with my wheelchair (he claimed it took up too much space) last time, which made me uncomfortable as we had brought my new chair, which doesn’t fold down but is much more comfortable if I have to sit in it for a protracted amount of time. On getting me settled on my usual chair / bed thing he immediately told me that my wheelchair would have to go back into the waiting room, leaving me stuck if I needed a wee. I presumed that the offending wheelchair would be allowed back in with me once Sharon and Jay were allowed to join me on the unit. Yes this nurse also demanded my husband and friend stay in the waiting area until my cannula was in. Why I have no idea but as I was going to be in his care for several hours I thought it best not to antagonise him.

Before any cannula attempts were made, the nurse filled out a medical record form. Every time I am in this unit something different is done, this time I was asked for next of kin and what I was being treated for. The nurse had put low-grade headache, to which I nearly exploded but instead  contained my simmering rage and informed him that I had the same CSF Leak that I have had every four weeks since the end of June. I know they have lots of people to remember who go in and out of the unit but they all remember I am the caffeine lady and that I have shit veins to cannulate. So much so that some of the nursing staff actively avoid having me as a patient because my veins are such a nightmare.

Twenty minutes later with one attempt at a cannula made, Sharon came into the unit. The nurse made a face, as to let her know she wasn’t welcome and she stood up to him by telling him something along the lines of “I have come to spend time with Rachel, I am not staying in the waiting room. And can you get me a chair please.” I loved it, as I could see how pissed of he was. She told me Jay had told her to come on in and that there would be nothing they could do. Jay was going to stay with my wheelchair out in reception, as he doesn’t do needles.

Thankfully cannula attempt number three worked (after twenty minutes of having a surgical glove filled with hot water placed on my arm) but I was now waiting for the caffeine to come from the pharmacy. The reason offered was that the pharmacy wouldn’t have processed the prescription that had been completed (4 weeks ago) if it had been sent in on Friday (28th Oct), so they had given it to them today. That was a little concerning as caffeine is such a rarely used drug that I was now at the mercy of the pharmacy having it in stock.

Cannula attempt number 3

Cannula attempt number 3

 

I had seen my neurologist the week before and had asked him if it would be possible to have my occipital nerve block injections. I was unaware at the time that he was the duty neurologist , so he popped by and saw me. He also introduced me to the “headache” nurse who would be able to perform the injections today. I was so grateful I shook his hand as the occipital neuralgia pain had been getting much worse since my last lot of injections ten weeks prior. Again I shouldn’t have got excited as the experience was brutal. 

Thirty minutes later (now an hour after I have arrived) the caffeine infusion still hadn’t been started as the caffeine hadn’t been dispensed from the pharmacy, the “headache” nurse came back and asked if I wanted to have them done, to which I agreed. She then produced a consent form, I told her I had never had to sign a consent form before to which she replied “nothing surprises me”.  The consent form then had to be corrected as where it stated what my medical condition was it said “chronic migraine”. As she hadn’t seen my notes she had presumed what was wrong with me. That wasn’t the only mistake to be made on the form, after I had signed my name I had to print it underneath. I managed to print my maiden name, that hasn’t happened in years. I can only guess that having Sharon there reminded me of the days before I was married.

This nurse had a totally different approach to the occipital nerve block injections than the doctor who had been doing them previously. The doctor would inject the local anesthetic in 4 different locations, this nurse just did two injections at the base of my skull and rammed them in. It hurt like hell and it was all over in seconds. Sharon was in a state of stunned silence, when the nurse left she said “that was f**king brutal Rach” and she wasn’t wrong. Needless to say I wasn’t impressed, I have been left with pain from the injection site and I still have occipital neuralgia. I have been using my Tens machine placed on my neck and the base of my skull to combat the pain. This is the first time these injections have failed to work, I am guessing it is something to do with the way they were performed.

Jay had now been sat in the waiting room for 90 minutes and was not best pleased that the caffeine infusion hadn’t yet been started. Nor was he happy that a wheelchair that would cost over £2,500 to buy new was having to be left unattended in the waiting room whenever he wanted to come and see me. I could sense he was getting tense so told him to go and pop into his parents, as he doesn’t get to see them very often. I also told him to take the wheelchair with him as I didn’t want my chair to be left in the waiting room with no one keeping an eye on it. He took me up on the offer deciding it was the best thing to do because at this point we had no clue how long it was going to take to get the medication from the pharmacy.

At midday, 2.5 hours after arriving the caffeine infusion still hadn’t been started. Sharon went and got us some lunch as we were both starving. She brought back a delicious pile of goodies so we got stuck in. I was so happy to avoid the hospital sandwiches which are totally vile but I usually end up eating because I couldn’t face breakfast. I have to say that was probably the highlight of the day, the cookies she bought for dessert were divine. Good old Marks & Spencer’s, even the crisps were out of this world.

As I was stuffing my face another nurse came over to start the infusion. She flushed the cannula that had been in situ for around 90 minutes but the vein had collapsed and it felt like someone was pouring battery acid down it. I would now need another cannula inserted. Knowing that he had been defeated by my shitty veins and no one offering to have a try, the original nurse went off to get someone else to have a go None of the nurses in the unit wanted to try, as all of them have at some point and know how difficult it is. I was starting to get concerned that they would abandon the infusion if they couldn’t get a line in, leaving me with ever-increasing head pain and no end in sight.

The ward manager was brought in to attempt to get a cannula in, he was cocky which bothered me as those types don’t listen when you tell them not to dig around if they fail to get a vein. He did however ask me where was good for a vein on my right arm, my left arm was now covered in horrendous bruises that had huge lumps under the skin.

The first attempt failed after looking promising initially by providing a flash of blood, which then stopped. My veins like to tease people by doing this on a regular basis. When it stopped working, I wasn’t surprised and nor were the rest of the staff in the unit. All of them at some point have been conned by my veins. Only two people so far have got a vein on their first attempt and both of those were junior doctors but they were only brought in after several other attempts had failed. He then went for the back of my hand which up until now had been a good place to try as on more than one occasion it has been successful. That one failed, so the tourniquet was applied tightly to my upper arm and I was asked to make a fist.

It seemed that I was doing this for ages when all of a sudden the nurse jumped back, as he did that I lifted my hand up from the table only to realise the back of my hand was soaking wet. When the attempt on the back of my hand had been aborted, there had been no blood at all so the nurse hadn’t bothered to put anything on it. Now blood was oozing out all over the table and dripping onto the floor. The nurse had jumped because he thought he had cut himself when he saw the blood and hadn’t realised it was coming from me. It took a while to stop the bleeding with firm pressure applied. Finally on his third attempt he got a cannula in and the caffeine infusion was started without delay.

About an hour after the infusion had been started Jay came back onto the unit with my wheelchair.  The nurse who seems to have an issue with mobility aids was on his lunch, so I told Jay to sit in it whilst we waited for the infusion to finish. None of the other medical staff on the unit have a problem with my wheelchair, there is more than enough room for it, it’s just this nurse seems to make it his mission to make me feel uncomfortable about its presence. Due to the fact I don’t want to have to make a formal complaint about him I have held my tongue however should he start on my next scheduled visit I will speak up. It’s bad enough having to come to terms with the fact I need to use a wheelchair, without some idiot making me feel uncomfortable about its presence in a hospital unit.

Five hours after we arrived at the hospital we left, with the next infusion date booked. This time I have booked it for a Thursday, as the nurse who I have seen since June has told me he will be able to put the prescription in on the Wednesday, so that we should be in and out in three hours if my veins play ball.

Bruise 24 hours after left arm

Bruise 24 hours after left arm

rightarmfollowingday

Right arm 24 hours later

Left arm 48 hours later

Left arm 48 hours later

 

Left arm 8 days after hospital

Left arm 8 days after hospital

My birthday on Tuesday (1st Nov) was a sedate affair as I was completely worn out after the hospital debacle. Jays birthday the following day was mainly spent in bed. We both had really lovely presents given to us and lots of messages on social media. On Sunday 6th November it was Mollie’s 12th birthday. So here is a photo of the old girl, who was thoroughly spoilt.

mollie-12

Cellulitis – I am taking a battering

For the last week or so I have been battling to stay out of hospital due to a nasty bout of cellulitis. Its unfortunately made me quite poorly, dropping my blood pressure, causing excessive fatigue and making my postural orthostatic tachycardia syndrome symptoms run wild. So I am afraid I haven’t been up to much writing so I apologise if this isn’t up to my usual standard.

 

A week ago when we eventually got some glorious sunshine in the UK I decided to take advantage of it, as for the first time in around six months I had some energy. I spent the Saturday cleaning up our small garden. When I say cleaning up the garden, I mean shuffling around on my bottom washing down the pots that hold our ornamental grasses. It took several hours and it was hard work for someone who hasn’t been able to do anything for a while. I worked for too long and pushed myself too hard as those of us with a condition like Ehlers Danlos syndrome and dysautonomia are prone to do when we suddenly get a surge of energy! I wish I would learn not to do this but I never seem to.

 

As I undressed that night with hubbys assistance, I notice a tiny red mark on my right knee. As it was so small I quickly ran my fingers over it to see if it was a splinter, I had been wearing jeans so I couldn’t understand where the mark had come from but at times during the day I had knelt on the decking. I couldn’t feel anything and it wasn’t hurting so I just went to sleep thinking nothing more of it.

 

On Sunday I woke up and my right leg was sore, my hamstring was particularly painful and my right knee had developed two blisters and was looking a little pink. I brushed it off as possibly blisters from kneeling, I am prone to developing blisters on my skin very easily, anything where my skin rubs against a surface continually and I will develop a blister. Shoes are a nightmare and as a child my feet would develop blisters even when wearing shoes that I had owned for months and had been worn continually. So you can see why I brushed it off.

 

As the day progressed my leg became quite sore and by the afternoon walking was becoming an issue. I grabbed an elasticated bandage and strapped my leg up from my ankle to my thigh. I elevated my leg for the rest of the day presuming that it would sort itself out. I have a great tendency to ignore injuries because they happen so frequently.

 

By Monday my knee was boiling hot and everytime my jeans caught my knee it was sheer agony. I presumed I had an abscess on my knee as I am prone to abscesses due to having the skin condition hidradenitis-suppurativa. By Tuesday my knee was looking like this

 

 

It was agonisingly painful, swollen and burning hot. I knew at this point that I had cellulitis and rang my doctors surgery. My gp who was working from home that day rang me back within 30 minutes and agreed with my diagnosis! I was given a 7 day course of flucloxacillin 250mg 4 times a day. It took a good 48 hours for the red ring that had formed around the red centre to subside. The whole time I felt pretty rough with a temperature and just generally unwell.

 

By Tuesday my knee was looking like this

The swelling had greatly reduced, the red ring that had surrounded it had gone and I was feeling a lot better. I rang my gp to inform him of the progress and it was agreed that I would keep an eye on it. As I was no longer in pain I didn’t push for more antibiotics, the reason being that I have real difficulty in swallowing capsules due to my EDS. For some reason capsules get caught in my gullet and I end up with them stuck in the back of throat for ages which causes burning and foul tasting burps! Sorry if thats too much information. I know now that I should have pushed for them as by late Friday evening the fact that infection had not cleared quickly became apparent.

 

On Saturday morning my knee had swollen up again and my whole knee had turned pink. It was itching like crazy and I was scratching myself to the point of drawing blood. Probably down to the EDS making our skin more fragile. I ended up calling 111 ( in the UK thats the number you call when the doctors surgery is closed, they offer advice and assistance) and getting them to place a call to Devon Doctors on call. I was told that it was likely that it could be up to six hours before I received a call back and two hours if I was really lucky. The call handler told me should my condition worsen and I hadnt heard from a doctor, I would have to call 111 again and they would decide what to do eg call an ambulance or get the doctor to ring me as priority. As my knee wasn’t as painful or as bad as it had originally been I wasn’t unduly concerned. After all last time I had waited 3 full days before seeking advice.

 

Within 30 minutes the doctor rang me, I explained what had been going on with my knee and immediately he prescribed flucloxacillin but at the dose of 500mg. He asked that for the first three doses I double up the tablets to hit the infection hard. The normal dose would be 1 tablet 4 times a day equalling 2g of antibiotics. The prescription was faxed to my local pharmacy and my father collected them for me so I could start them immediately. This is how my knee looked on Saturday morning

 

 

 

As you can see its no where near as bad as when it first started but my knee had swollen and with the threat of a hospital stay and IV antibiotics I was much quicker to act.

 

It explains why all last week I was starting to feel quite ill again and why my postural orthostatic tachycardia syndrome was misbehaving so badly. I felt so weak and fatigued I really couldn’t understand why.

 

The antibiotics are making me feel quite nauseous but I am happy to report 24 hours after taking them I have really noticed a difference my knee is much less swollen and the itching has reduced. The pink area has reduced in size however it is still extremely hot to the touch.

 

For more information about cellulitis you can click on this link NHS Choices. Cellulitis is a nasty infection that left untreated can quickly lead to septicaemia. My sister has been hospitalised in the past with it, hers was on her face as a complication from a horrendous sinus infection that lead to an abscess on her brain. I’ve never suffered with it before however due to the steroids I have been taking to alleviate the awful PoTs symptoms I’ve been having since february I think my immune system just couldn’t cope.

 

Of course nurse Frankie has been looking after me whilst I recover!