My TOP 4 recommended reads during lockdown

 

In March 2020 we were all greeted with the realisation that for the next few weeks (months!) our bins were going to go out more than us, in fact that was the only trip out for many of us, a walk down our path with our bin in hand! With all this time on my hands I decided to take up reading again. I've always read but I've done more of it since lockdown. I'm more of a fantasy fan when it comes to books, I like to 'lose' myself in the idea of something magical (who doesn't at the moment!) my favourite author of course being J.K.ROWLING. So I thought I would share with you my top 4 books I read during lockdown:

Mrs Hinch 'THIS IS ME' A memoir

Yes I proudly admit I'm a 'Hincher.' For those of you that don't know who Mrs Hinch is (everyone knows who she is right?!) she's a young woman from Essex who has become an internet sensation for her cleaning tips and hacks. I follow her on Instagram and she never fails to bring a smile to my face. Sophie (Mrs Hinch) and her family have to be one of the nicest families on Instagram and with nearly 4 million followers she has to be one of the most famous too!

'This is me' is her autobiography, it's her chance to have her say as she puts it herself. I really enjoyed reading it and recommend it to anyone out there that already follows her or to anyone new to her if you're reading this. I won't give anything away but you won't be disappointed!

The Boy, the Mole, the fox and the Horse - Charlie Mackesy

Love this book! It's basically a book of positive quotes that sort of tell a story. It's a book you can go back to time and time again. It's definitely a book I think everyone needs in their life. A real feel good book! Something we all need right now.

Dear NHS 100 stories to say thank you - edited by Adam Kay

I think the NHS have done an outstanding job during the coronavirus pandemic, in fact there isn't enough praise in the world that could even begin to describe it. I salute every single one of you!

This book is happy, sad, painful, funny and everything in between. It's made up of stories from celebrities about their experiences with the NHS. Plus all profits from the book goes to NHS CHARITIES TOGETHER and THE LULLABY TRUST. What's not to like?!

THE ICKABOG - J.K.ROWLING

As I said previously I am already a fan of J.K.ROWLING so I immediately picked this up when I saw it.

It's a brilliantly written fairy tale for children of all ages! It's about a kingdom and a myth, the myth of the Ickabog! It delivers a message about the power and hope of friendship. Again it was a story I loved. The illustrations inside the book are all drawn by children too which I thought was a lovely touch. If like me you love a good fairy tale then I recommend you give this book a go.

Caroline x 

A short message to those who think Covid rules don't apply to them...

 

It's beyond me how so many people doubt this virus or just brush it off as 'the flu.' In the UK alone it has claimed the lives of over 78 thousand people and worldwide over 1.9M. Yet there are still people that think that it doesn't exist or that they won't catch it so they don't need to follow the rules. Quite frankly these people fuck me off!  First of all you are being downright disrespectful to the NHS and all the frontline workers and also to those who have or who are currently fighting the virus and lets not forget all the people that have lost their lives and the families that have lost loved ones. I am sure all those people wish the virus didn't exist and they could hold their loved ones again. I am sure the people currently in hospital with it wish they were sat at home just like you are now. But sadly that's not the case. It is sadly the case that many people don't understand the seriousness of this situation until someone in their family or even themselves tests positive and by then it can sadly be too late. Yes it is also the case that you can have the virus and not have any symptoms at all but sadly you can still pass it on to someone and in doing so they could die and quite honestly if you are ok with that then you are an arsehole.

My message is simple. This virus is real. The people dying are real. The rate at which it's spreading is scary. Have some compassion for everyone around you. STAY HOME, STAY SAFE AND IF YOU HAVE TO GO OUT STAY IN YOUR OWN AREA AND AWAY FROM OTHER PEOPLE!

My battle with mental health

 

It all began around 12 years ago. It was a sunny day and I was hanging washing on the line and making the most of the drying weather when the phone rang. It was my Dad, I knew immediately something was wrong by the tone of his voice. "Dad?" I remember all he said was "I think mums dead" I remember saying "what?" and starting to cry. He proceeded to say she was on the floor and not responding and the first responder had just arrived. I remember crying and telling Dad "tell mum I love her, you must tell her I love her and I'm now on my way." He said "ok" and that was it, I took the washing off the line and put it straight in the car and we travelled to the hospital to be met by Dad. 

We quickly discovered Mum had suffered a brain haemorrhage and that she needed to be transferred to another hospital and the doctor put his hand on Dads shoulder and said "be strong." At that point we knew there was a chance she may not survive. That night was the worst night of my life, I couldn't sleep for worry. I kept thinking, I am only in my early 20's, she can't die, there's still things I want us to do together.

Mum went down for surgery the next day, I can't remember how long the surgery was exactly but I know it was longer than 7 hours, it was like I was in a nightmare and couldn't wake up. On top of Mum I also had Dad to worry about, he completely fell apart. Him and Mum have been together for over 30 years now. Dad is also my best friend. So watching him fall apart was heart breaking, we'd tell each other everything was going to be ok but I think we both knew deep down it may not be.

Thankfully Mum pulled through the operation. She was in Hospital for a month recovering. It was such a relief because she was alive! But also heart breaking watching her recover. Where they'd stapled her head after the surgery she was in a lot of pain, I think when anyone we love is in pain it's hard. On top of that she also had confusion and at times it was quite severe and nobody could tell us for sure if the confusion would ever go, would we ever get Mum back? Nobody knew and that was really hard. 

When she came home from hospital I stayed with them for the first 6 weeks to help. It was lovely to have her home, but also quite scary for a couple of weeks, what if something goes wrong? Mum was still a little confused but not as bad, but we still wasn't sure if the confusion would disappear  completely.

During those weeks once Mum was home life went back to normal, life just carried on and everyone was happy Mum survived and was home. I was over the moon we still had Mum and she was home but I couldn't find my 'normal' I couldn't understand how everyone could just carry on. I would go out for a coffee or something and sit and watch people going about their day, smiling, laughing and I remember I would look at them and feel so angry with them for being happy and carrying on with their day. I used to think how can you carry on like everything is ok when it's not?! when in reality they knew nothing about what I had been or was going through and they too probably had their own struggles, but it was just how I felt at the time.

Once home I tried to get back to normal, but I wasn't ok. I struggled to get out of bed in the mornings and I didn't want to see anyone. This went on for a few months until I eventually broke down and said I couldn't cope and the following day I booked an appointment with my GP.

Following the appointment I was given some antidepressants to try, the only downside to this was they can take up to 6 weeks to work and you can feel worse before you feel better. But at this point I was feeling so low I was willing to give it a go.

Fast forward about 3 weeks and I began to feel 'brighter' I mean I wasn't feeling wonderful by any means but I was now finding getting out of bed a little easier so for me that was an improvement.

About 9 months after Mum recovered we found out that Dad needed a quadruple heart bypass, again my world fell apart. My Dad is my world, he's my best friend and as long as he tells me everything is going to be ok then it will be. He's my go to person when I'm worried or scared or have something funny to tell him. So finding out he'd have to have this operation was awful for me. The tables turned, I was the one having to tell my Dad that everything was going to be ok, even though I wasn't sure it would be I didn't let him see that doubt in me. 

Like Mum while he was recovering from his operation he had severe confusion, again I found that incredibly hard to cope with and I also had Mum to care for and keep her spirits up. Thankfully he made a recovery and came home, but the recovery was difficult and took several weeks of me looking after them both.

Fast forward about a year and Mum and Dad were stable and I was feeling much more myself so I decided to talk to the doctor about coming off my antidepressants. We agreed and I began to cut my dose down over a 2 week period and then stop. I done great for months but then I found myself slipping back again, finding getting out of bed difficult and unlike last time where I left it for months before getting help I made an appointment that week and me and my doctor agreed I would go back on the tablets. However this time I found them to have a very different effect. I have cerebral palsy, which basically means I walk funny! But for some reason this time the tablets stopped my legs from working, I mean they literally wouldn't work! I would get out of the car and go to walk and sometimes I would manage 1 or 2 steps but then my legs would feel like concrete and I just couldn't move, which as you can imagine was quite embarrassing if I was out among people. So in the end after a couple of attempts with them and changing for a different antidepressant I stopped taking them. 

Since I stopped taking the antidepressants I have had to find other ways to cope with my anxiety and depression. There are several ways I've learnt to cope with my anxiety and depression and I will share those with you in another blog.

Over the years my parents have had many things to deal with, heart attacks, heart bypass, brain haemorrhage to name just a few and that's had a huge mental impact on me, mainly because we are so close.

So lets fast forward to the last 2 years. Dad ended up in hospital incredibly poorly and both my parents stayed with me for a while while Dad recovered, he was recovering well, we were eating out etc when one day he started complaining of a headache. Now, my Dad doesn't suffer with headaches so this immediately rung alarm bells with me and I said I would get him an appointment with the doctor the following day. Dad never one to want a fuss and not particularly fond of the doctors (I mean who is!) said he didn't want a doctor and he'd be fine in the morning. The following day came, I made the appointment and we took him to see the doctor. As it stands It's a good job I got the appointment as it resulted in him having to go straight to the hospital for tests and he was diagnosed with Giant Cell Arteritis, it's to do with the blood vessels in the head. Something I won't go into here but I will do an article on it at some point.

Dads treatment for the GCA is steroids for 2 years. However what they don't tell you when you start the steroids is the side effects, again this is something I will talk about later on. But the main side effect is the confusion and the dementia symptoms. That has been a struggle for us and if I was to say it's been hard and emotional that's an understatement! But somehow together we have battled through and now the dose he is on has dropped we can see a gradual improvement. But nobody told us what to expect, so it's been a very scary time for everyone. 

Mum back in May (2020) fell and broke her hip. You know sometimes I honestly think our family is jinxed! But 8 months on she is making a good recovery.

I think what I am trying to say is life has been hard, I have seen the inside of a hospital more over the last few years than I wanted too and more than some will ever see in a lifetime. I have seen both my parents suffer in a way none of us should see our parents. But I also know there are people worse off than us, struggling more than me. Do I still suffer with anxiety? Yes! Even more so now we have Covid. Do I still suffer with depression? Yes, but I know when it's creeping up on me and have found ways to try and deal with it. 

Every single one of us has bad days, we just have to pick ourselves up and try our best because at the end of the day all we can ever do is our best. We shouldn't feel ashamed or scared to ask for help when we need it, in fact asking for help is one of the bravest things you can do because you're refusing to give up.

My advice to anyone struggling mentally especially with the pandemic would be, be kind to yourself. Rest. So what if you didn't get everything done today that you set out to do, it doesn't matter. Get outside and get some fresh air. Pick up the phone and connect with friends or loved ones. Just a small 10 minute conversation can change your whole mindset for the day. Lastly remember your best is good enough, you are good enough and tomorrow is a new day to try again.

Caroline x

What they don't tell you about Giant Cell Arteritis (GCA)

 

Before I start I would like to state that you must always seek proper medical advice for Giant Cell Arteritis. This article is my own personal experience and should in no way be used to diagnose or treat Giant Cell Arteritis. 

Let me first explain what Temporal Arteritis (Giant Cell Arteritis) is. 

It occurs when the arteries particularly those at the side of the head (the temples) become inflamed. Blood vessels are tubes which carry blood around our body and GCA effects the arteries which are the largest of the 3 types of blood vessels. Arteries take blood with oxygen in from the heart to different parts of the body. GCA commonly effects arteries in the head and the neck.

Anyone with GCA may have a number of symptoms, some of which include:

• Severe Headaches
• Pain and tenderness over the temples
• Jaw Pain
• Vision problems such as double vision or loss of vision in one or both eyes
• Severe fatigue
• Flu-like symptoms such as a mild fever

If you have any of these symptoms you should seek medical help straight away. GCA is a medical emergency and if left untreated can cause permanent sight loss or a stroke.

Now I have explained a little about what GCA is I can now start to share my experience with it. 

If you have already read my article 'My battle with mental health' then you will already know that back in 2019 my Dad was diagnosed with this condition. We got very little warning, he just suddenly got a headache. Dad was never one who suffered with headaches so it immediately rang alarm bells with me and although he said there was no need to get a doctor and that he would be fine I arranged a doctors appointment the next day (Monday morning) and it turns out it was a good job I did because he was told he needed to go to hospital straight away for tests.

I remember we got there and they sat him in a chair and we were surrounded by other people, most of them surprisingly young (20's -30's) and they were having what looked like their regular treatment, it was all very laid back. But they took blood from Dad and that was that for a couple of hours. The blood results eventually returned and confirmed the diagnosis of Giant Cell Arteritis. I can't actually remember if he also had an ultrasound scan of his temples too, but he may well have done. 

Dad was put and is still on a course of steroid treatment (prednisolone) he started off on 40mg. The idea is that you gradually come down over 2 years and then hopefully stop although some people have to stay on them. We were given the medication and sent home and that was that.

What they don't tell you...

I don't know how to start this next chapter so I'll just jump right in! 2 weeks into taking the 40mg he started getting dementia symptoms. He was repeating himself, getting easily confused, not remembering things he normally would and as the weeks went on it got no better. Dad is the most laid back easy going person I know, but suddenly he was short tempered and agitated. He had terrible mood swings and then five minutes after an outburst it was like it didn't happen. He also got extremely depressed and suicidal too. When Dad had other appointments I would mention this and say that he wasn't like it until he started the steroids, but I would just get blank looks. so I took it upon myself to start looking at the side effects of Prednisolone and the more I read the more I saw Dads symptoms. There's the common side effects of things like weight gain and sweating a lot, but there are other side effects too such as 'dementia like symptoms' and psychosis. Which is exactly what Dad was and is going through!

As the months went on as a family we just accepted it as 'normal' for now and I just kept saying once the steroids stop it should wear off. We have often questioned whether he does in fact perhaps have dementia, he had a brain scan but nothing 'exciting' showed up according to the doctor. I keep saying to all the doctors that question me about it that he only started being like this 2 weeks after the steroid treatment.

Twelve months after the initial diagnosis Dad had a follow up appointment with the specialist and we mentioned the dementia symptoms and the mood swings etc and he just casually nodded and said that should start to wear off once your steroid dose goes below 10mg. We left feeling quite positive knowing that Dad probably wasn't going bonkers (as he puts it!) and that eventually he will be ok.

I have since spoken to a couple of my own doctors who have seen what steroid treatment can do, causing psychosis and confusion and I must admit that was a relief to hear someone say they believe you because they too have seen it.

Dad is still on the steroids he still gets very confused and some days are worse than others but thankfully his mood swings have more or less stopped and he's more like Dad again, he has his sense of humour back and we can hold a normal conversation. compared to a year ago he's a completely different person which is a huge relief for everyone. He is due to stop the steroid treatment in October, slightly later than planned because of a short illness. But I am optimistic he will make a full recovery. 

What I don't understand is why we were never given any indication of what to expect? The specialist we saw a year after Dads diagnosis wasn't surprised when we spoke about Dads symptoms, I have spoken to a couple of doctors that were also aware of what the steroids can do. Yet so many medical people that I approached had never heard of 'steroid induced dementia' or the other problems it can cause. Surely the nurses in the department were aware of the side effects? I understand not everyone is the same and not everyone gets side effects, but in this instance I feel it would have been better if were told what to expect in the 'worst case scenario' we would have then been prepared. Instead Dad was given the steroids to bring home and a book on 'living with Giant Cell Arteritis’ it had no mention of anything in there either which again would have been helpful.

It has literally meant I have spent hours searching the internet for information on Prednisolone, googling 'steroid induced dementia' and somewhere I came across other peoples stories of them also having the same side effects. It has been an exhausting journey for us and something we were really not prepared for but we have got through it.

I would love the NHS to create a more informative booklet on what to expect so other families don't have to go through what we have (I'd gladly help them write it!)

I'd love to hear from anyone who has had similar experiences with GCA. 

For anyone out there that's been diagnosed with the condition or to the family and loved ones, please know you're not alone. I know it's a very scary place to be but there is help out there start with your own GP. 

Caroline x