POTS

On Monday I went to see a Cardiologist for a two year follow up appointment. When I relapsed over two years ago I was tested for everything under the sun. I saw pretty much every “ologist” you can think of. One of them was a Cardiologist to rule out any heart problems. 

I had a 24 blood pressure monitoring and a 5 day ECG test. All came back clear thank goodness. The only thing that kept being floated around was POTS.

Postural orthostatic tachycardia syndrome (POTS) is a condition where when you change from lying to standing it causes an abnormally large increase in heart rate. A possible reason for my falls.

Of course later I was diagnosed with Atonic Seizures which explained the falls so POTS was put to one side and dismissed.

It has only been brought up to me by one Consultant, last year, who also suggested I had viral meningitis back in 2004 when all this started. His belief was that I have many neurological conditions due to this. Predictably other Consultants disagree. 

Anyway, back to Monday. I fully expected for it to be a complete waste of time and for me to be discharged but instead I was cautiously diagnosed with POTS. This goes alongside my epilepsy and the other 4679379 conditions I have. 

There is medication for POTS but as I’m on a cocktail of drugs already and they have particularly bad effects it was agreed I wouldn’t start anything new. 

The advice was to always keep hydrated and eat more salt. Eat more salt I hear you say?? Yes really. Bring on the McDonald’s! That was what he was saying, wasn’t it?! 

So I say cautiously diagnosed because no doubt next week I’ll get a letter saying it’s not POTS. Did I ever tell you about the time I was diagnosed with psoriatic arthritis for four years before some random rheumatologist came in, looked at me for two minutes, and took the diagnosis away. Now I don’t want arthritis but if I do have it I want the proper treatment for it. That’s been put to one side for now while I deal with my current problems. We’ll come back to that a later date.

Now we don’t know if (a big if) I have POTS what proportion of my falls are seizures and what are POTS. It’s one big guessing game and I’m the little person going round the board while the Consultants play. 

Do you remember the Raggy Dolls? I’d definitely be sent to the reject bin!  It’s a good job I know other raggy dolls who can join me. 

The saga continues...

When Mother's Instinct Doesn't Work

Everyone has heard of mother’s instinct. It’s well known that when you become a mother you get this magical power, that you can spot when your child is ill, especially if there is something really wrong. It’s instilled into you as soon as your baby is born that you will have this instinct.You will know. 

Except what if that instinct doesn’t work? What if it doesn’t kick in? What if your baby becomes ill and you put it down to just a general bug but really they had a very severe form of meningitis? 

Well that’s what happened to me. I didn’t know my son was seriously ill. My mother’s instinct failed. As a family we were all ill so I had no reason to think anything was amiss with my three month old son. The difference was, that at the end of the week we all got better and Charlie’s illness developed into meningitis. He died a week later. The signs of meningitis are very similar and there was very little difference in his behaviour than from the illness that preceded it. 

I’ve spoken to enough people who know about meningitis in a medical capacity to be satisfied that it wouldn’t have changed the outcome. He had an extremely bad strain of it, pneumococcal meningitis. One of the worst. I still feel a huge amount of guilt though. Why didn’t I know he was seriously ill? Why didn’t I have that instinct that something had changed in his body? Should I have known the signs? 

Mother’s instinct is just another part of the mummy guilt we all feel. It’s another addition to the list of things mum’s should have. Nobody talks about a father’s instinct. What if instinct is just a myth and actually it’s good luck and good timing that some people pick up on things that others don’t? 

I’ve spoken to mums in parenting groups who say the same thing. So why do we feel so much guilt about it? Why do we, as mother’s, feel the pressure to know what doctor’s don’t? Why do I beat myself up that I should have instinctively known he was in danger, when even the health professionals didn’t know? 

I hope there is someone reading this who has felt the same as I have and knows they are not alone. It happens to other people too. It doesn’t make you a bad parent. We’re human, we miss things. When you have a small baby you are a sleep deprived, hormonal mess. It’s hard to think past anything other than feeds, sleep and nappy changes.  

“Trust your instincts” is all you hear when you have children. Whenever my children get ill now, I am unable to trust my instincts. My experience has taught me that not all illnesses are harmless and they could die from them. My first reaction to any illness is to take them straight to A&E which of course is a massive over reaction. Thankfully I have a very sensible husband who calms me down and keeps me relatively sane.

My mothering instinct failed me once. How do I know it won’t fail me again? I don’t and I have to live with that. I just need to let the go of the guilt and accept, like all the other mum’s out there, I’m not perfect and that’s ok. We’re just doing our best, whether we have great instincts or not. 

For signs and symptoms of meningitis contact Meningitis Now on 0808 80 10 388

To read more about Charlie read his story here

This post can also be found on the Huffington Post UK website here

My YouTube Channel

I must be mad because I hate the way I look and sound on videos but somebody has requested I do vlogs on some of the subjects I blog about. I’ve started a YouTube channel called YetAnotherMumBlog and I would love it if you would subscribe to it and give me a thumbs up if you  watch my videos. To get started I made one about talking to young children about living with a disability, having Epilepsy and being in a wheelchair. Take a look! 

https://www.youtube.com/watch?v=MFXWu6TOs4E&t=2s

I Forgot To Grieve For My Son

Eight years ago in October 2010 my son, Charlie, died very suddenly. He contracted meningitis at 14 weeks old and died a week later. It was a horrendous week of agonising lows and culminated in us having to turn his life support off. The next day we had to go home without him. My body was still making milk for a baby that wasn’t there, my arms empty, I was in post partum mode and my brain was wondering what on earth had happened?

He was gone but my body and mind couldn’t accept it. I carried on expressing my milk and donated it to premature babies. I couldn’t bear to stop producing milk. It was such a big part of my relationship with him so I wanted to stay in that mode, I wanted to still be the person who had a baby in their arms. For those moments I could close my eyes and pretend he was still alive. 

I threw myself into a massive campaign to raise awareness of the signs of meningitis. I tweeted every celebrity I could think of to get people to read Charlie’s story. I did interviews with magazines, newspapers and radio. All the time what I was really doing was pushing my grief away. I put it in the “to do” pile. That could come later. I had work to do. 

I couldn’t look down and see the big gaping hole in my life and all his things gone (as requested by me). It was too unbearable to think about. Too awful to be real. So I didn’t think about it. I thought about raising money and saving other people. It sounds admirable and brave but it was just a coping mechanism. A way to avoid going through the grief process. 

Then six months after his death I found out I was expecting another baby. We’d made the decision to have another baby fairly quickly for many reasons. Partly so there wasn’t too much of an age gap with our eldest son and partly to give us something else to focus on and look forward to. 

Again the grieving process was put on hold. I was pregnant, I couldn’t grieve. At least that’s what I told myself. It was another reason to put it to the side. Another excuse to bury my head in the sand that he’d gone. 

Life went on and we had a daughter who kept my mind occupied and my arms were full again. She was never a replacement for Charlie and never will be but she was a welcome distraction. I was so full of love for her and still am.

It was only recently when the Alfie Evans case was all over the media that I had a breakdown. It was similar to our case in many ways. Same hospital, he was in intensive care and we had to turn his life support off. Charlie could have been in the same room, had the same doctors and staff as Alfie. To see people call out murderers to them was too much for me to handle. I don’t think those protestors realised the harm they were doing to the other parents in Alder Hey. By fighting for Alfie they were causing great distress to the other parents and children who were in there going through their own battles.

With all those feelings I’d pushed away, now bubbling to the surface, it made me realise; I’d forgotten to grieve. 

I’ve now started having grief counselling through Meningitis Now and working through my feelings. I’ve finally stopped the excuses and I’m now learning to accept that he died and is not coming back. Even writing that hurts unbearably. 

I don’t recommend my coping strategies. They may have seemed positive at the time but they just put off something I was always going to have go through. It’s so important to experience that process early on and not push it away. As a wise friend once said to me “grief isn’t something you can go round, it’s something you go through” Almost eight years later I’m understanding that and starting on the long journey to acceptance. 

The Meningitis Now Helpline is 0808 80 10 388.

Charlie’s story can be found at http://charliecheekychops.blogspot.com/

This blog post was first published by the Huffington Post UK here

The Pitfalls Of Social Media With A Disability

I think everyone who uses social media has a moment of crisis at some point asking whether they did the right thing when sharing something. I think this is especially true for people with disabilities. I know I worry constantly about whether I’m oversharing, moaning too much or pretending my life’s perfect when it’s not. Overthinking?? Oh yes, definitely! 

Last week I went away with my family for a few days and as a big social media user I posted lots of pictures of us having a good time. I took loads of selfies as my usual view is either of my bedroom or garden with me being housebound. Then I panicked. What if people thought I was faking my illness? What if people think I really looked that good? Was I presenting an image that wasn’t real?

To counteract that, I posted a status about the realities of my week away. How all my photos were taken from wheelchair height, I was pushed round all day and straight into bed at the end of each afternoon. How the activities wiped me out each day even though I wasn’t really doing anything. Every selfie took good lighting, makeup and a filter. I’m 38, I have wrinkles, the odd grey hair and a mummy tummy. I try to post the good and the bad but I draw the line at the ugly! I want to feel good though, I want to feel human after being ill for so long. Is it wrong to present myself in the best way after living in pyjamas in bed for so long?

Then I worried I was sharing too much and moaning about my ailments. So where does that leave me? If I don’t post on social media I become lonely and isolated. I’m at home on my own all day and online contact is a lifeline to me. I can chat to friends without the difficulties I face in leaving the house.

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Do people want me hear about the realities of my day to day life? No, probably not. Do people complain when we only show our good sides? Yes! There is no winning with social media. It’s a fine line and I’m not sure I tread it well. 

I’m an open book and try to be as honest as I can about my life. Today I started counselling almost eight years after the death of my son from meningitis. To say my life has been tough is an understatement. 

It isn’t all bad and I want to show the good bits too. The days I get out are few and far between and if I’m wearing clothes and make up you know I’m going to post a selfie! 

Social media is a blessing and a curse. It’s a beast that has taken over my life but has saved me in so many ways. It’s helped me raise awareness of many issues close to my heart and for me, writing is a form of therapy. It’s not something I’ll be giving up so I’m afraid the selfies are here to stay!

This article was first published on Huffington Post UK here

I Would Encourage Others To Speak To Young Children About Life With A Disability

This week I’ve been into my daughter’s class to talk to the children about living with epilepsy, disabilities in general and using a wheelchair. The children are in Year 1, so five/six years old, and are at a perfect age to learn that everyone is different and that’s OK. I also wanted to teach them empathy towards others with disabilities, whether they are other children in their school or people they come across in the street.

I started by telling the class I have epilepsy, which is a type of disability. I asked them what they thought having a disability meant. This prompted many funny responses such as, “It means all your bones are broken” and, “You can catch being poorly from someone else!”

I told them having a disability means something that stops you from doing normal everyday activities. I wanted to explain to children that some disabilities are obvious, like me in a wheelchair, and some are on the inside and you can’t see them. I wanted them to understand you can’t always tell if a person has a disability just by looking at them and invisible disabilities are very hard.

I highlighted the differences we all have such as hair and eye colours. I went on to say some people are tall and some people are small. Some people have special talents. I explained that my brain is just different to theirs, even though I use a wheelchair I can still do things like write stories, go to the park etc. Sadly not to play football, as one child asked me! Although we did figure out a way I could do this if I really wanted to!

I told them it’s OK to ask someone why they have a disability. I prefer that than people just staring at me. Most people will be happy to answer questions and explain what is wrong with them.

I wanted the children to realise that some people with disabilities get better and some don’t. I told them I have two people called carers who come to my house everyday and make some food for me as I can’t do that. I need lots of help but some are able to cope on their own. 

I use a wheelchair because I have epilepsy, which means my brain doesn’t always do what I want it to do. I went into a little more detail to say our brains control our bodies and when I have a seizure it’s like a little cough in my brain that briefly stops a part of my brain working. For older children I would have explained more about brain waves and how seizures affect the patterns of the waves. The children I was speaking to needed a very simple explanation.

I explained further that seizures can happen in different parts of your brain so they affect different parts of the body. Mine affects the muscles in my legs and make me fall down. I use a wheelchair to keep me safe and it stops me from getting hurt. 

I told the children I take tablets from a special brain doctor called a neurologist to help my epilepsy. The tablets can make me tired and I have to spend a lot of time in bed. 

With the help of the teacher we asked the class questions such as, ‘can you imagine what it is like to have a disability?‘,’ how do you think it would feel,′ and ’what things would you have to do differently?′

It’s really important to talk to young children about people with disabilities and I would always encourage someone with a disability to go and talk to children. They are naturally curious and ask you anything that is on their mind. It is the perfect opportunity to shape their thoughts and encourage them to treat people the same. The main message I wanted to get across was that I am different, but we are all different, and that’s a good thing.

This article was first published by the Huffington Post UK here