End of my tether

It seems to be one thing after another at the moment and if you are bored reading it you can imagine how tedious I am finding living with it? The week after my unhappy hump day went reasonably well. I only needed two days on the diazepam and then it was taken as and when needed. I was bobbing along quite nicely until 4.20am Tuesday morning when I woke up with that familiar sinus pain like I had been smacked with a shovel and a distinct lack of balance that let me know Tuesday was just going to be awful. I had a migraine and this one was going to be an utter bastard.


I fished out my neck collar, took what pain medications I could and propped myself up on my pillows hoping that I had done enough to limit the attack to a few hours. However it wouldn’t have mattered what I had done yesterday this migraine was going to rate number 2 on the worst migraines ever – number one having taken place in either February or March and left me with amnesia. I didn’t drink or eat for well over 16 hours because even the thought of drinking made me want to puke and although my stomach was burning, I just couldn’t eat as I again felt so nauseous at the prospect of eating that I just had to ignore the rumbling stomach and hope that I wasn’t sick from being hungry.


I don’t remember a lot of yesterday, I remember at around 9am shouting help because Jay hadn’t twigged that anything was wrong and hadn’t bothered to check on me . He thought I was having a long over due lie on. I couldn’t roll over to grab my phone and I couldn’t think what to shout to get his attention. I was also having diarrhoea at this point (not in bed thank goodness but had resulted in 6 trips to the bathroom where I had stumbled clinging onto the safety rail) which was really fun when any smell good or bad was making me wretch and of course my shit smelt of roses and rainbows LOL! My head also felt like an axe was attempting to cleave it in half every time my head left the pillow. Help indeed was needed, but what could be provided was limited. Hot water bottles and a basin were brought to me. Thankfully I wasn’t sick but Oh how I wanted to be. 


Without being melodramatic the pain was so bad yesterday there were points I wanted to go to sleep and just not wake up. I have been through the agony of a CSF leak and although that was awful there was always some relief at some point. There was nothing yesterday the pain was just unrelenting, the light was too bright but my face was too sore to wear sunglasses. I was sweating and then I was freezing cold. I wondered if I had contracted meningitis. I did actually consider calling 999 for an ambulance but I couldn’t bear the prospect of being poked and prodded, expected to answer questions and be in a noisy environment. You know you are poorly when you don’t want to move and you don’t care that you should be calling for help.


At some point during the morning I heard them talking about oxygen on the radio ( I’m very lucky that I don’t need complete silence during an attack just a darkened room) and I remembered oxygen always helps me when I have a migraine. Another plaintive Help was shouted and Jay sprang into action set up my oxygen machine and got me hooked up to it. He also got me a bottle of water because the orange squash he had given me was turning my stomach and after each mouthful I wanted to bring it back up and more. The oxygen did help it lowered the pain level to an 8/10 instead of the 10/10 it had been since 4.20am


I spent the majority of the day in bed. At 1pm I got up because my back was killing me. That was a dreadful mistake after an hour I went back to bed and straight to sleep despite the pain. I got up again at 4pm and managed to have a drink, then I was so thirsty I couldn’t stop drinking and then I was ravenous with the post migraine munchies. I could have eaten my body weight in whatever food you brought me. I was despite sleeping all day fucking shattered. I went back to bed again at 6pm tried watching some tv but having jolted awake three times in 30 minutes gave up and slept solidly until 1am…..and was then awake for the rest of the night. I managed to get an hour of sleep between 7-8am this morning.


Today is brought to you by the letter C – for Coffee. I feel like I am floating I am so tired. I have managed to sort myself out and have a shower with Jays help. Honestly I was honking after sweating so much yesterday. My autonomic nervous system was going mental. I feel like I have taken too many pain killers as my head is floating and my face feels like it is sticking out 3 inches further than it is. I am going to put a letter together for my gp telling them I can’t go on like this. Just thinking about the fact I will have yet another migraine next month is making me cry. I have been tracking them on my phone and they happen at least once a month and always between the 18th -22nd of the month. It isn’t fair on me for these to continue to happen and it isn’t fair on Jay as he can’t take one day off a month to look after me as I am so ill I can’t do anything for myself. 

People also seem to be under the impression that you have the migraine and then like magic you are back to normal again, in reality it can take me several days after a severe attack to feel like I am functioning anywhere near normal, so it’s not just one day a month I am losing but 3 or 4 depending on the severity.


From what I have briefly read up during the early hours of this morning around 40% of women find their migraines worsen during peri-menopause and menopause. Even in the absence of menses there is still a very slight hormone fluctuation which can be enough to trigger a migraine. Which would be my case. I stopped my contraceptive pill in December as I wanted to see if the menopause fairy had joined me and it has now been over 5 months and there has been no period. Yet my migraines will always occur since stopping the pill between the 18th – 22nd of the month without fail. Occasionally like this month I will get two migraines, I had one last Tuesday, so exactly a week apart. I am at the end of my tether with it. All I want to do is cry but whats the point? It won’t change anything. I need specialist input now so I am going to write to my gp as due to Covid-19 I don’t want to go to the surgery unless I have to and ask if they ever did contact neurology like the doctor said she would and if they had suggested some medication as continuing on like this isn’t an option. I’m at the end of my tether with it.

Reflections

The start of a new year always makes me a little reflective. I always think that now I am in my forties I should have my shit together. When I was a teenager people in their forties all seemed to know what they were doing, were confident and self assured. Now I am in my forties I realise like everyone else my age that those forty year old’s I admired were just winging it. No one has got their shit together and we all are just making it up as we go along. All that those 40 year old’s had that I didn’t as a teenager was life experience. I don’t think there will ever be a eureka moment in my life where I feel like I have figured everything out. I think I will forever be winging it and pretending that I know what the hell I am doing.

As you get older I do think you appreciate the simpler things in life. You put home, happiness and friendships above the material things. You also start to refuse to put up with so much crap or maybe it is you finally get the courage to start putting yourself first for a change. At the end of last year I made some quite sweeping changes. I reassessed some relationships, I binned some, I reinvigorated others. I pushed myself to make an effort with those I didn’t want to lose. It is funny during the hard times you really notice who runs towards you and who runs away. And there is the third group of people those that in public or on a public forum make all the right noises but do nothing practically to help.I have noticed this a lot over the last 4 years.

 Those of you who follow the blog or know me personally know that basically over the last 4 years Mr Myasthenia Kid and I have been to hell and back. Briefly ( which is a laugh as even briefly so much has happened each event is a blog post in itself) in 2016 I developed a CSF leak which left me confined to my bed for much of the year and if not in bed lying down. It made socialising very hard, several of my friends were wonderful but one in particular would make all the right noises you know the “just let me know if you need anything” and when you did ask you were met with radio silence or a long list of excuses as to why they couldn’t help. I will never ever be able to repay Imogen for how she helped us during that year, looking after the dogs at the drop of a hat for 8 hours whilst I got treatment at a hospital an hour away. Same for my parents who when Imogen couldn’t help would come up and drive me back down to the hospital a journey of over 100 miles. 

In 2017 we lost our dear friend of over 20 years, Andrew, in a car accident, his passing made me realise I needed to make more of an effort to stay in contact with my friends as none of us are guaranteed a tomorrow let alone a next week. In this year I also lost a family friend of many years who I would have regular conversations with via Facebook Messenger and telephone calls, although we never met in person. Later that year I was to learn my Grandmother and my dear friend Pam ( my neighbour twice and the person I saw most other than my husband) had both been diagnosed with lung cancer, Willow our 11 year old Weimaraner passed away on December 15th and it broke my heart. Due to the events of the following January I don’t think we ever mourned her passing properly. Both Imogen and Heather rushed to my side that day. Another friend offered but I realised at that point that I didn’t want her there at the time I was surprised by my feelings but let it pass thinking it was grief.

In January 2018 we lost both my Grandmother and Pam, despite knowing that both their diagnosis had been terminal we had lived in a bubble that it wasn’t going to happen. I had many conversations with Pam, she moved between despair and complete denial. It was emotionally hard going for me, which probably sounds quite selfish and self absorbed but I challenge anyone to listen to your friend of over 20 years talk about the fact they are dying and walk away untouched. Pam passed away the same week Andrew had a year earlier, which I have always found quite bizarre, especially since Pam had accompanied Jay and I to Andrews funeral less than a year earlier.

 We had no idea then at the ticking time bomb that was contained within Pam’s body. Looking back now there were subtle signs that something wasn’t right, she had looked really tired all the time etc a whole heap of little symptoms that added together were something deadly. Even if we had known then I doubt much could have been done but it makes me angry that mistakes were made in her care and the people that made those mistakes have got away with it. 

When Pam passed away both H and Immie rushed to be by my side again. The other friend basically told me she was coming, despite me saying that she wasn’t needed. It was uncomfortable, for everyone as it was like there was a cuckoo in the nest.  I didn’t know why I didn’t want her there, I just knew that if I was hurting she was the last person I wanted present. I should have listened more to what I was feeling and realised that those feelings were a huge red flag. But instead I blamed myself, telling myself I was cruel and unreasonable to be feeling like that. 

Reflecting back on the situation the lesson I take away from this is don’t ignore those feelings / intuitions / gut instincts. If I hadn’t of ignored them I would have saved myself another 18 months of being treated like shit and only being visited when she thought other people may see her doing it. It was very much a keeping up appearances situation.

There are still a lot of emotions to process from the January of  that year. I haven’t stopped crying since starting to write this and the grief has come out of nowhere as I certainly wasn’t feeling sad before I started writing today.

In the July of 2018 my mum was diagnosed with ovarian cancer a very rare type at the same time I had stuff going on in my life that was extremely stressful. I was already suffering from terrible anxiety and depression after losing by now 5 people from my life and one dog ( in the February I lost a school friend who I had known from the age of 11 and we used to have regular chats on social media, just last night I thought I must ask Jon what planet I can see in the nights sky currently, as Jon had bought himself a telescope not long before he passed – totally unexpectedly and I had to remind myself that he isn’t here). I struggled to get up and out of bed as the stress was doing a real number on my chronic health conditions. I was passing out frequently and had issues with ptosis. The heat of the summer didn’t help either.

My mum then had major surgery in the August, in the September we had good news that although what had been removed was cancer, it was tiny, the size of a pin head and very unlikely to return. She is currently in remission, no one is cancer free until they have been 5 years clear. She has regular checks at the hospital and will do for another 3 years.

I finally thought that we may get some peace, after all what the hell could happen to us next? Surely the universe was done toying with us now? But no, 2018 was going to end badly and 2019 wasn’t going to start any better. On 29th December 2018 we lost our beloved boy Frankie aged 12 ( a Weimaraner) and his Mum Mollie (Weimaraner) followed him over Rainbow Bridge exactly a week later on January 5th 2019 aged 14. Both had incredibly long lives for the size of dog they were but at the time it felt like my world had imploded. I had spent every day with my dogs since 1st June 2008 ( except for hospital stays ) They were a huge part of my life and most of the time the only company I had except Jay.  I didn’t know that I could be in such emotional and physical pain and yet still wake up day after day. I thought Mr Myasthenia Kid was going to drop dead from a broken heart he looked so fragile and  broken. Even with Dembe our Labrador puppy coming into our lives on January 11th 2019, we were struggling.

This was where I noticed this friends  persons absence even more, no messages checking on how I was doing. No card, no flowers, no visit. Yet again H and Immie were there by my side, along with Paul, Pam’s partner. I will be forever touched by Paul coming over on the Sunday after Frankie passed and then coming over again the following weekend when Mollie passed. He sat and shed tears with us and told us not to worry that Pam would be looking after them until we all met up again.

 I had cards and flowers from friends and cyber friends and yet no call to check how we were, beyond the initial messages of me telling you what had happened. That is when the penny finally dropped, that when I needed you, you disappeared as you had done so many times before, unless there was an opportunity for you to be seen as a “good” person. There were so many people I only knew on Facebook who came to visit to check that we were ok or who messaged me out of the blue. I have never felt love like it, so many people hugging us, looking out for us, physically being present. 

When Dembe arrived oh my goodness, so many visits. I have never known a puppy get so many toys and presents. I had baby gates offered within minutes of me asking on Facebook if I could borrow some, the same with crates etc. Nothing was too much trouble for people. It was overwhelming and it was something I have never experienced before and I am so touched by all those people. However it made this persons lack of action / concern even more painfully obvious. That hurt, even with all the pain I was in already the fact that we could all be so easily forgotten was another huge red flag.

Initially I made excuses,  maybe I hadn’t said I was struggling? Maybe you didn’t realise I was grieving? Maybe you didn’t understand the depth of my grief? But even to the village idiot it would have been glaringly obvious. Contact over the year became less and less. It felt more and more like it was one way traffic which indeed it was. I was lucky when I messaged you if I got more than a couple of sentences out of you. Again I made excuses, you were busy with your new life now. You certainly made me feel like I was interrupting you living your best life. When it got to 4 months since I had last spent any time with you and even longer since we had spent any time alone, the decision was made. I had waited a month at that point for a message to be answered. I snapped. I was faced with the prospect of you turning up on my birthday and I knew I couldn’t pretend for 5 minutes let alone several hours that everything was ok and that I was grateful for the few crumbs of attention you had thrown my way.

You would have never put up with being treated like that by anyone, yet I was just supposed to accept this? The last 2 years had passed in a haze of grief but I was starting to feel stronger. I knew that your behaviour  was now emotionally damaging to me. I couldn’t move forward if I was going to continually wound myself, wondering what I had done wrong, why I wasn’t good enough or why you felt you could take advantage of my good nature. So I ripped the band aid off and called time, reasonably amicably. I had been hesitant about hurting you when it was clear from your actions you had no concern about hurting me.

I suppose I am reflecting on all this as that is what the new year does. December and January are full of anniversaries of people and pets passing they are hard months. It’s only now on 22nd January that I feel like the weight has been lifted . That I realise that the last few years I have been operating / functioning with a low level depression going on in the background. That the anxiety has lessened enough for me to see things clearly.

 You had changed or maybe the real you had come to the surface? Perhaps I chose not to see the real you or the nasty comments you made on a regularly basis. I put those down to you being verbally clumsy despite the fact you claim to be a writer. I realised I had put up with far more than I had ever credited myself with. I was right to call time and that belief is unshakeable now. I’m not the only one that has noticed that you have changed, grown colder and more bitter than you have ever been. I feel sorry for you as your world is shrinking and you are so full of yourself you can’t see it. One day you will come crashing down to earth with a bump and you will be all alone. Maybe you want it that way, so you can perpetually be the victim?

I reflect back and realise I should have found the strength earlier. That I should have seen the pattern that I could never depend on you. That you liked to take and use, yet giving absolutely nothing in return.  You may think you have everybody fooled but truthfully more and more of us are seeing through you. I hope you find some peace because only someone who is utterly miserable with their own life finds joy in hurting others.

I’m back

Like all holidays, that sabbatical seemed to go alarmingly fast! It seems like 5 minutes ago I wrote and told you I was taking a break, for the first time in forever. Loads has happened 

since I wrote my last blog post back on 24th October. Despite the fact it has only been 3 weeks. Crazy how life goes.

Hubby and I had a good birthday and were spoilt by our friends and family. Due to being unable to get the time off work I spent the afternoon of my birthday with Heather. She brought a load of second hand clothes with her from a local group, where you offer things to the community and in return if you take an item you donate fresh food to the families being helped by the group who are receiving food bank parcels. The group is currently helping around 20 families who through no fault of their own are struggling. In all my life I don’t think I have ever known so many people who are struggling financially or so many people relying on food banks. When I was growing up I had never even heard of a food bank. Yet for some families these days it is the only way they can feed themselves once the rent and bills have been paid. So whilst I had fun with the clothes at the back of my mind were these poor families.

We had a good laugh trying on the clothes, my brain is taking a long time to catch up with the fact that I have lost 4 and a half stone (63lbs) I see smaller size clothes and think well that will never fit and then almost die of shock when I can get it on. Some of the clothes were hideous or just too revealing. But I am so grateful for the stuff I have been able to take from it to tide me over until I get to my target weight. At the moment its jumpers and stuff I can layer up that I need due to my poor temperature regulation and menopausal hot flushes. I am either freezing cold or throwing every item off because I am suddenly dripping with sweat. 

Heather gifted me a wonderful birthday present, which I haven’t stopped using since I unwrapped it. It is a hot water bottle that is long and skinny. It must be over a metre long and about 10-15cm wide. It can take up to two litres of hot water. What I love about it is that I can wrap it around myself. So I can apply heat to my lower back and hips in one go. Where as before this could have only been achieved using three. 

Mr Myasthenia Kid bought me a wool pressing mat to help me with my sewing and embroidery. It means I don’t have to wait for him to be home to get the ironing board out. Any surface can now be turned into an ironing board and it produces the most amazing results. I also got a beginners book on crochet. I have wanted to teach myself for ages and wasn’t expecting anything crochet related until Christmas so it made a lovely surprise. 

I managed to get lots of things made which reduced the panic I had been feeling. I still have a mountain of stuff to do but it is a much more manageable mountain. I was feeling before like I was being suffocated under the list of jobs that needed done which is why I took time away from the blog. I just needed to get rid of the jobs that I could and focus on the stuff that I needed to get done. Some stuff I can post here but the rest I can’t due to them being people’s Christmas presents.

I’m still making my way through lots of stuff but I no longer have to keep pushing myself beyond my limits. I am no longer surviving on painkillers and very little sleep.

We also managed a trip out for a few hours for a walk, somewhere I could take my scooter. Dembe adored going to Haldon Forest. He was spinning around like a kid with excitement.

 

It was so lovely to get out and blow some cobwebs away. I said to Jay in the car on the way home “if you told me at the start of the year that I would be able to feel this happy again ever, I wouldn’t have believed you”. Even when we had Dembe in the beginning I just felt like I was going through the motions. Now I feel like I am living again and want to be present.

I have taught myself to crochet ( how well I have no clue) I started on the 2nd November ( badly) and found some videos to help me. My hands have been fine up until today, the base of my thumbs are killing me this morning and my fingers are really stiff. I have managed to make myself a snood / infinity scarf from a yarn tea cake ( huge ball of variegated yarn ) which I finished last night and I am also working on a Christmas blanket.

 

The pattern on my snood is almost like one called vintage shells. So it is raised up and not flat, I made a lot of mistakes, mainly counting – thanks dyscalculia  but I am incredibly proud as considering I hadn’t even picked up a crochet hook until 2nd November 2019 , I think I have done well.

I’ve had two appointments, the eye hospital where they were incredibly pleased with how well my eyes are doing with these new drops. I still have the odd evening where I forget to apply them because I have fallen asleep but on the whole I do remember. I had the dentist last week and as I thought I need a filling so that will be happening on Tuesday next week. I am trying to keep that at the back of my mind. Tomorrow I have an ultrasound on my neck to check out the lump only I seem to be able to feel. It is non stop fun here.

We are back at dog training again. Dembe loves it there and cries with excitement as he knows where he is going on a Tuesday evening. We have also started dog agility training for fun, our first lesson was on Sunday. Dembe did incredibly well, his obedience training has really paid off as he was by miles one of the best behaved there, even though he was sick – probably because he had been swimming in the sea before we went. Yes my baby had swam in the sea!

This Saturday is Dembe’s first birthday! Can you believe it? It is crazy as we still see him as our tiny pup. He won’t be fully grown for another 12 months but I think he will always be our dinky dot.

And yes I am knackered and in pain from all this going out. I have to try to pace myself and get some down time in between excursions but unfortunately that isn’t always possible. I am learning to be kinder to myself and not see rest days as a failure or lack of achievement.

Truth v Gossip

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am a survivor

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

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

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

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

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

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

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

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

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

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

And in case you have forgotten what the front looks like

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

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

Dembe has changed locations

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

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

And yes he is holding my thumb in his mouth!

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

Dangerous Medicine

We all know that all medications and that  medical procedures come with a certain amount of risk – the biggest  being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here  (and yes the newspaper has managed to spell his name incorrectly.) 

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live. 

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds.  She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever. 

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

 Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

 I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome

 

Solace in creativity

Last week I wrote of my guilt at being happy, although I received lots of supportive comments, my emotions are still all over the place. The last week or so I have cried everyday over Mollie, Frankie and Willow. I think that is why I have been trying to occupy every minute of every day lately through some sort of creative endeavour or to get out of the house, so I can’t sit and brood.

I am beyond exhausted, last week Jay was on holiday and we spent the week catching up on jobs that have probably been outstanding for 12-24 months. Obviously I am very limited in what I can do and with Dembe ( our nearly 16 week old yellow Labrador pup) it is very difficult to do things together. We made a massive dent on the list of jobs that need done but as anyone who owns a house will tell you, one job soon multiplies and becomes another 4.

We have sorted out our bathroom, its been in a state of almost done for around 10 years I kid you not. Little jobs needing done but neither of us having the energy or inclination to get it completed. I finally cracked and decided a week before Jays holiday enough was enough and it would get completed. Initially it was just that the grout and silicone sealant would be redone. That however has evolved into the bathroom being redecorated – overdue as I believe it was last done possibly 5 years or more ago. Which then means that before the walls are painted the woodwork gets repainted. So the thing spirals. All because I can’t spend any free time doing nothing because the minute I do the sadness overwhelms me.

I have been working hard on the creative side of things as well. For a while I didn’t want to do anything, I didn’t know if I would ever be able to do anything again. Both days that the dogs health suddenly declined I was sat at my embroidery machine. I blamed myself for not paying them enough attention. To not sew or give myself a  creative outlet was a way of punishing myself. Because as I stated in last week’s post I love to make myself feel guilty.

So I thought I would share my makes with you. I am limited with how much I can type this week as my shoulder (right) is grinding away and popping out, my wrists and fingers are also playing me up. So typing is uncomfortable.

I have been making this one for a friends granddaughter. This will get turned into a cushion at some point over the next few days, depending on when my shoulders and wrists / fingers decide to cooperate.

I’m not happy with either the hedgehog or the sheep as I rushed the hooping and as a result they have puckered. However these two will be turned into cushions for our home and I was desperate to see how this design stitched out.

I love the highland Cows design, this was from the same Etsy seller who designed the sheep and the hedgehog. This one will be a cushion for us. I am toying with putting this design on one of my blank sweatshirts.

 

 

The Charlotte cushion is a Christmas present for my niece – you probably think I am bonkers but I like to work well in advance in case my health suddenly declines. That way I don’t feel stressed out in December trying to make lots of gifts to a deadline of when Jay will drop them down to our relatives.

The owl Cushion – I bought this design around Christmas time. Due to the dogs passing I never got the opportunity to stitch it out. So I had a go a few weeks ago. I am really pleased with how it turned out. 

The Evie cushion was for a friends Granddaughter. This will be the last one I stitch out of this design as it has been poorly digitised. Every time I stitch it out I have problems in the same place. I have invested in a new unicorn design now!

 

 

 

 

 

 

 

 

I made a job lot of doorstops, many of these will be gifted during the year or at Christmas. These doorstops have washable covers as the bottom has an opening that has velcro to fasten it. Inside I have used cat litter ( clean obviously) to weigh it down. I place the cat litter inside a ziplock bag and also use an elastic band so it has two forms of closures to stop any leakage! I enjoyed making these door stops, it made a nice change and was a challenge for me after making so many items the same on the run up to Christmas and with making cushions.

As I haven’t posted a photo of Dembe on here for a few weeks, I thought I would share this with you. 

This is me and the little man. He sleeps every night with his head on my pillow. Most nights his nose is touching my head or face. I love feeling his breath against me. He is such a loving little chap. Without him I’d have never made it through the last 10 weeks.