So, a little update for anyone that’s interested..
Last Thursday at 1 week post op I noticed that my wound was bulging out of my back. At first I thought maybe just swelling, but it came on very suddenly and was very obviously more than just a bit of swelling.
I visited the ward on Friday morning and saw the on call doctor – an X ray was done to check the shunt, and the doctor revealed that all is as it should be, and it looks to be connected still.
Something positive at least!
He also confirmed there is a definite collection of CSF fluid, but because of me reporting that I am feeling well with little symptoms, was happy for me to go home and monitor over the weekend.
Today I returned and the bulge has got bigger. This is obviously a concern as it is not only not supposed to be there, but it hasn’t improved, only worsened in a matter of a few days.
I am now at home, lying flat for the next 3 days, only moving for necessary things ie. Toilet, shower, food.
The aim is to be flat for the majority of time before I return for a check up on Thursday. They have drawn around the bulge and taken photos to compare.
It’s Christmas week and it goes without saying that this is far from an ideal situation, but let’s be honest there’s never really a good time for anything like this.
Positivity is lacking and I am very much feeling fed up, anxious and upset about what the coming days / weeks may hold for me and us as a family.
Completely out of action and not even able to carry out normal tasks, or help with the kids is hard, hard on everyone.
The older two understand, but Ivy is finding it hard to adapt already, she doesn’t understand, and of course only wants me, and no one else.
Providing I still feel well, I may be able to manage things at home to see me through the christmas period, with no interventions or hospital stays, which is all I can hope for right now 🤞🏻
Since the time of writing this, things have progressed.
After 17 hours of lying flat, waking up this morning, it was obvious that things had worsened over night.
The pocket of fluid has increased in size, and also there is leaking from the wound.
This increases the chance of contracting meningitis.
I am currently sat waiting to go to the operating theatre, as another x ray has shown up a clear disconnection of the shunt.
They need to reconnect the valve and attach it to a muscle so there is as little movement as possible in the healing process.
Fingers are firmly crossed that this is the beginning of the end.
I can’t face Christmas in here, away from my family 🤞🏻
3 whole years of no symptoms or you could say, 3 years of ignorant bliss.
Even though I know deep down there is always a possibility something can go wrong or that symptoms can come back, it never gets any easier. You’d think I’d be used to it by now but I’m really not.
Heartbroken, devastated, angry are some of the emotions I am feeling right now.
On and off for the past couple of months I have been experiencing some symptoms that are familiar and have been linked to a shunt malfunction many times before.
After a week or so of experiencing headaches & shoulder pain I decided to contact the hospital for advice.
They have been amazing and saw me within a couple of days, I had an X Ray and a head CT which confirmed there was nothing ‘obviously’ wrong, but decided it would be best to do an MRI scan just for good measure and mainly to put my mind at ease. Ironically, I went into this thinking it would be a walk in the park and that if anything, I probably didn’t really need to be there as my symptoms were manageable.
Once again, I was not prepared for the outcome.
Unfortunately, my shunt is now working too hard, draining too much spinal fluid away. I have never had this issue before so this is a first and something new.
Previously, I have always suffered with a blockage/breakage of my shunt which has resulted in high pressure build up, which probably explains why I’ve being brushing off my symptoms and blaming them on other things.
As a result of my shunt over draining i am experiencing low pressure and as a result of this I have developed a condition called Chiari Malformation. This is basically where the bottom part of your brain sags down into the top of your spinal cord. In addition to this I also have something called Hydromeylia – a fluid filled sack in my spinal cord, again caused by over drainage. Obviously this is not supposed to happen, and with both conditions comes a whole load of other symptoms. It was confirmed something would have to be done about it and was decided a new valve would be fitted, in hope of altering the current pressure and prevent any further over draining.
All of this was revealed last Thursday and everyday since has been a struggle.
As most people already know I suffer with health anxiety, which over the years has become more severe. Last weekend I experienced what I think was my first ever panic attack. I am riddled with physical symptoms so badly I am finding it hard to function and carry out medial tasks.
This is obviously understandable given that I have had so much information to process in a matter of days but trying to gather myself and get a grip on it before it gets out of hand, is easier said than done.
I had surgery to insert the new valve on Thursday, so I am currently 3 days post op of what feels like operation number 75,647, yet at the same time feels like the first time all over again.
I got home on Friday evening and unfortunately spent 7 hours in A&E on Sunday, to be readmitted to the ward. Concerns of loss of sensation and other worrying symptoms led to a follow up MRI this morning, earlier than expected. I have been reassured that what I am experiencing is normal for what I am currently going through and that they have seen an improvement on the scans, with reducing swelling of my spinal cord. I now just have to give it time and wait and see what happens and how I respond to the operation. A situation I have been in many a time before.
Leaving my three babies again, shattered me into pieces. Leaving Jonny to hold the fort, yet again has been hard. Particularly at this time of year, it is not a position I need, nor want to be in at all. I am struggling with the ‘Christmas spirit’ and all the overwhelming stuff that comes with it as a Mum. Getting through each day is a huge win for me at the minute, and my only focus is to make it as perfect as possible for the kids.
I keep telling myself this is happening, it’s out of my control and I can get through whatever is thrown at me. I’ve proved this in the past…
It’s been a LONG time since I’ve done a blog entry. The truth is, the reason why I’m writing this post is because I need to.
I have mentioned before that blogging really helps me mentally and right now my mental health is taking a beating so I’m trying to practice things that I know help me, no matter how small.
It’s been a hellish few weeks to say the least. Saturday 11th September Harry tested positive for Covid 19. It came as a bit of a shock and was found on a regular LFT.
I could cope with this. Yes, it meant I would have to take some time off work and stay at home, however taking the new rules into account this meant that the rest of us could carry on as normal as possible, which was an added bonus.
Fast forward to 5 days later, myself and Jonny then tested positive.
Exhaustion – I have never in my life experienced anything like it. The effect it had on my body was like nothing else. I’ve battled through 3 newborn stages, sleepless nights and I’ve even had countless operations that all zap your energy but nothing compares to that caused by Covid.
The kids have shown no symptoms at all, thankfully.
Trapped at home, all 5 of us at the same time hasn’t been as bad as I thought it would be but it’s safe to say 2 weeks in we are getting on each others nerves and we are all craving that much needed routine.
On Wednesday of this week, Poppy tested positive, which now only leaves Ivy.
There have been tears and tantrums, mainly from me, but the truth is, what can I do about it?! Nothing. It’s life and however perfect it would have been it was never going to stop at Harry was it?!
I mean, I wouldn’t mind but I can’t even taste to drown my sorrows in gin and pizza!
To be fair, me and Jonny have both suffered relatively mild symptoms overall but being a MAJOR sufferer of health anxiety the minute I tested positive there was only one thing on my mind, one thing I couldn’t see past, the one symptom that haunts me – shortness of breath.
Shortness of breath, that feeling of not being able to breathe properly, like I’m being strangled is something I suffer almost on the daily from anxiety but the reality is, I can breathe it just feels like I can’t, but imagine genuinely not being able to breathe. I can’t and don’t want to. Ever.
So obviously, in true style I started googling all about it. When I could expect to feel better, statistically when things will worsen if they’re going to etc and by this point I didn’t need to read any more because i’d convinced myself by day 5 that I couldn’t breathe and that I would be hospitalized and maybe even die.
I mean, reading this back now, I sound absolutely ridiculous, I know that, but in those moments, I really did believe the intrusive thoughts in my head.
I’m sure that there will be people reading this thinking it’s not a big deal,and in the grand scheme of things it really isn’t. I know there have been millions of families affected by Covid in far worse ways than us, but for me and the way I am it has been a bit of a big deal but at the same time it’s nothing worse than what I’ve dealt with in the past. This is the reason why I have done this blog entry. So I can read it back and look at how far I’ve come. I’ve been having therapy for some time and I’ve learnt a lot about my anxiety and myself as a person, yet I got so bad over the last week that I forgot all of my coping mechanisms which led me to feeling worse than I probably should have been.
I’ve been very quiet on here but to be honest I’ve just felt like I’ve not had a lot to ‘blog’ about over the last 8 months. We are approaching almost a year since my final operation and all of my previous posts focus a lot on my condition and in that department things are going well, which is great.
The hardest part of all this has been the kids. There is nothing worse than being poorly, or hungover with children, it’s just an absolute no, and trying to keep them alive whilst feeling like rubbish has been really hard. Nothing changes for them, they still get out every single toy they own and shout Mummy and Daddy ten thousand times a day. All that being said, I am so grateful for our family. Not once have I felt alone (despite wanting to be) and the most important thing is that we all have each other, and that we’re all ok.
So, here we are, finally. My first blog entry of 2021
I’m not entirely sure why it has taken me so long. I wasn’t sure what to write about. I feel like I’ve lost my writing mojo a little recently. Spending too much time doubting myself is probably why, which is something I need to stop doing, and I’m working on it.
Life is tough for us all right now isn’t it? Everyday life is tedious, it’s like groundhog day. Wake up, feed and sort the kids, nursery run, home schooling, work, daily chores, tea and bed with a little walk thrown in there somewhere, and repeat. Everyday rolls into one, emotions are running high, we are all craving just a tiny bit of normality and I’m over here praying that schools will open again soon! Come on Boris.
In terms of IIH and my shunt, things in that department are still great. I am now, believe it or not, approaching 5 months since my last surgery and I’m feeling really good, which is amazing and it all is beginning to feel like a distant memory. I can’t believe it is almost a year ago that my problems began. This is how it is though, when the shunt is working its like I don’t have anything wrong with me, but when it isn’t my entire life gets put on hold and I am unable to do the simplest of tasks. I am very grateful to be in my current position and everyday I pray it remains this way.
On the plus side to lockdown, part of me is really enjoying not being able to do a lot. Appreciating the little things I have always taken for granted and having the opportunity to spend more quality time together as a family and appreciate everything and everyone around me. I know for sure that there a some things I don’t want to return to normal, whatever ‘normal’ is.
Which leads me to say, since the beginning of the year I have been walking a lot. I think most people have as there’s not a lot else to do! I really love it. It is helping massively with my anxiety, allowing me to get some sort of control over those physical symptoms and it makes me feel better in general too. Walking here and there, doing the school run or going around the block a few times a week are things I have always done quite regularly without a thought but never really that far. I have downloaded the Strava app on my phone and seeing how far I’ve walked makes me want to go further and push myself more and I am loving seeing my progress. Since the beginning of this month I have walked almost 22 miles. I’m aware it may not seem like much of an achievement to some but to me it is a huge deal and definitely something I’m feeling really proud of.
There has been a brief discussion with my husband Jonny about turning it into something positive, a bit of a challenge and a goal to work towards. Maybe I could take on a challenge and tie it in with raising some money for the IIH charity, who knows. Watch this space!
Christmas is finally here. To be honest, It doesn’t feel like Christmas, but it’s here, and it’s happening. This year, I think we all need to make the best of a bad situation, and that’s what I intend to do, as I feel we all deserve it after this year.
As expected, the kids are so excited, and despite covid, Christmas doesn’t stop for them, and nor should it for the rest of us.
I have touched on this briefly in one of my previous posts, but I feel like it’s relevant for me to talk about in this post, and get it off my chest.
The, ‘what ifs’, and worry are still haunting me. I am doing my best to try and convince myself that something is going to go wrong, or should I say is already going wrong. Everyday, constantly, it’s consuming me. I mean, I can’t possibly be feeling ok for this long surely?!
Self diagnosis is all too easy nowadays. Google is the devil. Do not do it, it doesn’t make you feel better or give you an answer, it worsens it all. Instead I’ve looked at it rationally, as well as seeing my therapist. I’ve tried to put things into perspective, and to weigh up why I might be feeling these things. This is me and my life, I convince myself that things are wrong, when usually, 9 times out of 10, it’s anxiety that’s giving me all the symptoms I’m so worried about.
The physical symptoms are what bother me the most, and as opposed to the mental side, they can often be debilitating, making it almost impossible to focus on anything else.
There has been several different issues I’ve ‘suffered’ with this week, and almost gone to the doctors with everyone of them, but I haven’t, which is huge achievement for me.
I’m not sure whether or not Christmas is triggering these feelings more than usual or not, as I do get stressed at this time of the year, rushing around sorting everything out, and of course wanting everything to be just perfect, when in reality, I don’t think any of it matters like I think it does.
I guess some of these feelings are understandable, as it has only been a couple of months since my last surgery, and the memory of an awful time I would rather not re live anytime soon. It is still so vivid in my mind, whenever I get a pain or a niggle, especially in my head, I can’t help but question if it’s happening again.
2020 has been a rough ride for everyone, and a year I’ll be glad to see the back of for many reasons. Sometimes it’s hard to remember that this year saw the birth of our little Ivy, the light in the dark. For that reason, this year will always be special to me, so I guess it’s bitter sweet.
I wish you all a very Merry Christmas, and here’s to a better 2021. 🥰
As most people will already know, I am a mum of three.
(And I still I can’t believe it!)
I always wanted to have kids, and to be a Mum.
I’ve always had that maternal instinct in me.
Growing up with 2 brothers, I always knew I wanted several children.
I wanted my children to have siblings, as I have.
After being diagnosed originally, for a split second i thought all my dreams may have been dashed.
However, Doctors explained it wouldn’t hold me back, and to move forward, and live a normal life. It wasn’t long after that, that we had Harry.
All three of our babies were born via elected C Section.
It seems that people are always negative towards C -Sections, and other than the recovery time, I’m not entirely sure why.
You get to know when your baby is coming, there’s no waiting, which is always a bonus, and it is a very relaxed build up, in my experience.
I always get asked why I had to have them, and the answer is I was given the option.
There were pros and cons for both natural birth, and having a c section.
Having weighed them all up, and taking into consideration that I had a brain condition, and previous issues with pressure, I decided it would probably be better for my head if I didn’t push and add any unnecessary strain.
With Harry I had an Epidural.
Due to where my shunt is situated in my spine, they decided this would be the best option.
It was amazing, better than I ever could have expected.
As I’ve spoke about in previous blog posts, what followed was not.
Whether it was due to pregnancy, nobody really knows for certain.
All we know is that things were fine, and then they weren’t, and it just so happened that Harry arrived somewhere inbetween, so I guess it’s easy to blame it on that.
It was hard, really hard.
Something I will never forget, yet at the same time, it’s a distant memory.
He was with my mum, all day, everyday until Jonny got home on a night.
As shit as things were for everyone, life still had to go on.
There were bills to pay and mouths to feed.
Long story short, I got an infection in my c – section wound somewhere inbetween all of this, and it’s the main reason why I was so poorly.
To anyone reading this that may have to have a c section, please don’t let what I am about to say put you off, as I have gone on to have 2 more and been fine.
Due to the fact I needed surgery to fix a foreign object (shunt) inside of me, and the infection in the C -section wound, everything had to be removed, and I had an external shunt valve for 10 days.
I had antibiotics, and all sorts of other meds pumped into me constantly, all whilst I was bonding with my newborn, as a first time mum from my hospital bed.
Sometimes, I feel robbed of those first days.
Those very first moments, are so short lived, especially as it was my first baby.
I’ll never get those moments back, but then I think to myself, he doesn’t remember.
Those 4 weeks are such a tiny amount of time after almost 6 years spent with him now, and in reality, I didn’t miss much at all.
With Poppy, I was put to sleep.
The anaesthetist decided that he wasn’t confident enough, due to scar tissue in my spine, that an epidural, or a spinal would work properly, if at all, and wanted to deliver her under General anaesthetic.
Having being put to sleep so many times already, it wasn’t that, that really bothered me.
It was the fact I wouldn’t get to see her be born.
It was traumatic to say the least, and the pain upon waking was horrendous, and definitely something I knew I would rather not go through again.
I realise though, that acting on what was best for both me and poppy, was the most important thing.
Following her arrival, things were amazing, and I had no major issues with the shunt, or my condition, which is why we went on to have a third.
After having Poppy, I would walk around the village, and as she got older people would stop me and say, ‘Oh you won’t need to have anymore now that you’ve got one of each’.
After several times hearing this, I couldn’t bare the thought of my ‘baby days’ potentially being over.
I never really felt complete, as they say.
Taking into consideration how well things went during the pregnancy, and after the birth of Poppy, we decided to try for another, and a lot sooner than expected, along came our little Ivy.
Ivy was my 3rd elective C Section.
One thing I knew, was that unless there was absolutely no other option, I didn’t want to be asleep again.
My anaesthetist on the day was amazing, and much to my delight, she looked after me a couple of weeks later, for one of my shunt revisions.
She went above and beyond to contact the neurosurgeons to find out their opinion of a spinal this time around, and to make sure it wouldn’t interfere with where the shunt is located in my spine.
I was fully aware there was a possibility it may not work, and I may have to put to sleep at any moment, but despite a few uneasy moments, and losing a lot of blood, I witnessed her arrival and got my wish.
I don’t need to go into what happened after all of this, as I have already explained this on my previous blog posts.
What I will say is, that despite everything, I would do it again a hundred times over, if it meant I would have her, and I certainly feel complete now.
The main purpose of this blog post is to give hope to anyone with Intracranial Hypertension that might not yet be a Mum, and is worried about what they might face.
Despite all of the hurdles I have faced, after Harry, and in between each pregnancy, it hasn’t stopped me fulfilling what I really wanted in life.
Even though there has been some tough times, it’s now a distant memory, and I have three beautiful children that have been worth everything.
So, it’s been a few weeks since my last blog entry. Since then, I have debated not posting anymore, and even deleting the blog, as now that I’m not poorly anymore, I have no idea what to write about.
Then I remember there is so much to talk about, and there is always something to write about, that others can relate to in some way.
So here we are again, Lockdown take 2.
To be honest, it doesn’t feel as bad as last time, although it’s still not ideal. No homeschooling, thankfully, and I feel a damn sight better than I did, so that a positive.
What isn’t great is that it plays havoc with my anxiety. I was suffering with my mental health anyway, without this thrown into the mix. It’s hard work at home with the kids, limited to what we can do, or where we can go, all whilst Jonny is still so busy at work. Nothing changes, life has to go on, just in a different way. Other than my support bubble, I am now limited to who we can see, which doesn’t help either. We all miss Granny & Grandad, which is somewhere we visited almost on the daily before all of this.
Harry is having to isolate due to a closure of his class bubble, so that’s not ideal, and it contributes to my anxiety, and generally just makes things a little more difficult.
As i have mentioned in a previous post, I have been out of action for so long, unable to socialise, and enjoy things, so lockdown 2.0, and covid is just another thing holding me back. I almost feel like I’ve lost myself a little, like this is just life now, or certainly for the foreseeable. I am sure this is not the case, and I will get back to doing the things I love, but sometimes I find it hard to see light at the end of the tunnel.
With Christmas just around the corner, I am busy getting things prepared, and getting the Christmas shopping out of the way. I want to try my best to make this year special. It is Ivy’s first Christmas, and it’s been a rubbish year that I’ll be glad to see the back of in all honesty.
I’m now almost 7 weeks post surgery (it definitely feels longer!), and I feel really good. Like, REALLY good. In fact, this is something I couldn’t ever picture again even up to 7 weeks ago. I know I should be holding on to this, and remaining positive that this is how things will remain, and I’m really trying, but I do find it hard to shut off the ‘what ifs’. I spent so long hoping, and thinking, ‘this is it, I think it might finally be over’, to have my hopes dashed and find my self back at square one. However, in between all the other surgeries, the reality is that I never felt like I do now. I almost feel like I am in a race against the clock to make sure everything is done and sorted, just in case something goes wrong again. I really wish I didn’t feel this way, but it’s to be expected I suppose. After all the never ending disappointment this year, worry, is definitely something that, if it wasn’t out of control, it definitely is now, and it’s certainly something I am working on.
Ok, so I’m not going to lie, I am finding the balance of 3 children really hard.
I absolutely love being a Mum, I really do, but one things for certain, I’m definitely not afraid to admit, that they do irritate me from time to time.
I feel like being a Mum is what I was put on this earth to do. I always knew I wanted a tribe of children, but I don’t think I was ever fully prepared for the struggles that come with motherhood. I don’t think it’s any more harder having 2 children than 3 necessarily, but I only have two hands and at ages 5 months, 3, and 5, they can be very demanding.
This week in particular, seeing everyone’s amazing Halloween decorations, and all the fun things people are doing with their children, can make me envious at times.
I am lucky if I can get out of the door in a morning, or make a proper home cooked meal on an evening, let alone do all the extra things I probably should be doing with them.
That’s not to say we don’t do fun things with them though, just not very often!
The fact Jonny is self employed (and busy) doesn’t help. Anyone married to someone self employed/ business owner, will relate to the fact that every day is a normal working day. Even Jonny admits that a lot can be said for the routine 9-5, 5 days a week jobs.
Both have pros and cons.
Jonny working a lot enables us to do things we probably couldn’t otherwise. And being brought up with a workaholic dad, it’s kind of the norm for me.
I guess the only saving grace is that what they don’t know about won’t harm them, and thankfully they are pretty easily pleased. Not to mention, when we do manage to get out and about the kids love it.
Despite all that, I did manage to grab 2 pumpkins from Asda that didn’t get carved until late, the night before Halloween, and even then didn’t get put outside until late, on Halloween!
I’m not sure what I’m really getting at, other than so many other Mum’s seem to have their shit together, and right now, all of the above has highlighted that I really don’t.
Since recovering from my surgeries, I have started to do the school run again, and all the general duties that I was unable to do prior to everything.
It’s nice not to rely on help from either my Mum or Nanna in some way. Without them, I don’t think we’d have got to anywhere on time, and they definitely kept on top of things at home.
Mornings can be very shouty and definitely stressful. After dropping Harry & Poppy off at school and nursery, more often than not, I am left feeling that dreaded Mum Guilt for taking my struggles out on them, when really, it’s not their fault.
Just recently I have finally started to feel myself again, which is something I couldn’t vision happening a couple of months ago. I felt like I would never get a taste of normality again. Now, I try not to take anything for granted. Being at home, even if we’re doing absolutely nothing, means everything to me. Things that were once important, aren’t so much anymore, and it has really made me appreciate my little family, even more than I already did.
In fear of sounding ‘cringe’ they are the centre of my universe.
Having said that, I am also not afraid to admit that sometimes, I do need a break, a chance to feel like Emma again, and not just Mummy. Which is also something that hasn’t happened for a very long time.
It’s been almost a year since I have been able to enjoy going ‘out out’, as I’d call it, although after everything, this isn’t massively important to me anymore. It’s something I did enjoy, however 9 months of pregnancy, lockdown restrictions, and 5 months of hell, put a stop to it.
When I felt my worst through illness, I couldn’t even think about going anywhere, let alone actually doing it.
Typically, just as I am starting to feel back to my usual self, and feeling like I am ready to get back to doing things I love, Boris goes and announces yet another lockdown!
It’s hard to explain how it has felt, but it has been very depressing watching everyone going out and enjoying themselves throughout all of this, for what is almost a distant memory for me.
It has been difficult watching everyone around me enjoy life, and there have been times where I have just felt like I am existing, but I know this is just a phase that will soon pass, but for now, onwards and upwards.
I guess the whole point of this blog post is just to let anyone reading this know, that it is ok, and normal, not to have it together all of the time, and if anyone is feeling how I am feeling right now, then I’m right here with you, and you are definitely not alone.
We’re all doing our best, and this feeling won’t last forever ❤️
Since seeing my therapist recently, she suggested it might be a good idea to blog about life as a Mum of three, and the struggles that come with it.
So I have decided that to make this blog about other things in my life, not just IIH.
When Harry was born in December 2014, I had no end of trouble with my Shunt, for which I ended up spending 4 weeks in hospital, undergoing several operations.
He was my first baby, and although my Mum was allowed to bring him in, it was a really tough time.
I remember worrying that Harry would think that she was his Mum, and not me.
She spent every single day with him, whilst Jonny was busy working, and visiting me.
All of my children are really close to my Mum, she’s being a huge part of all of their lives, since the day they were born, and I am so grateful for that.
This time around, the last 5 months have been tough on, not only me, but the children as well.
I’ve lost count of the times I’ve told them that I’ve just got to go to hospital to get checked out.
Some of the times, I have returned the same day, most times not.
The only saving grace after having Ivy, was that I did have breaks inbetween hospital visits, unlike when I had Harry.
This has led to huge separation anxiety issues with Poppy.
Now every time I leave to go to work, pop out, or even if I leave the room and she can’t find me, she gets so upset.
I’ve since had follow up hospital appointments and visits, and I’ve explained where I am going and she automatically thinks mummy isn’t coming back.
Harry has coped really well, but is very emotional and sensitive of late.
Ivy is so young, she probably didn’t realise so much, however Jonny did say she was unsettled on the night where I wasn’t here.
I feel robbed of the first 5 months of Ivy’s life, I didn’t really miss anything as such, but I did at the same time.
I didn’t miss any milestones, but, I missed the enjoyment, and how it should have been. As it is for everyone when they have a baby.
Covid had already made sure of that in some ways, the baby shower, the baby groups etc, but I wasn’t at my best, so I spent the majority of the time wishing my days away, and longing to feel myself again.
I didn’t even realise at the time, how it would affect them.
I think I just thought that they were resilient, they wouldn’t remember, and that they’d just take everything in their stride.
It is a lot for them to deal with at such young ages, and so difficult for me, as I knew they needed me, and I couldn’t be there for them.
Not only was it a case of I couldn’t physically be with them because I was in hospital, but on the times that I was home, inbetween all the surgeries, things still weren’t right and I didn’t feel myself.
I was suffering with symptoms, and trying my best to carry on with every day life. Everything else took a back seat, and there were even days I was just counting down the hours until bed time.
Looking back, i realise how bad I actually felt, and how far I have come.
I am enjoying my days once again, and I’m able to give them the attention they need, and we can hopefully, going forward, finally start to enjoy our life as a family of 5 🥰
This week has seen me attend several opthalmology appointments. On Monday I was at Hull Eye Clinic, to check up on my eyes, 2 weeks post surgery. On Wednesday, me and Jonny travelled to Sheffield to see an Eye Specialist about a procedure I may potentially have needed, and still may need, in the future. The procedure is called Optic Nerve Sheath Fenestration. This is what is required if the shunt fails to protect your eye sight.
Following surgeries, there were concerns over the last few months, that although the shunt WAS working, my eyesight wasn’t improving. Having found why my eye sight wasn’t improving, and having had surgery to correct this, my consultant wanted me to visit Sheffield anyway as a precaution.
Following lots of vision tests, scans, pressure measuring and pictures of my eyes, I received the good news, that there is very minimal swelling at the back of my eyes, and that everything looks back to normal (or should I say normal for me, as it will probably never be ‘normal’ again)
A lot of you are probably wondering why I can’t just have it done anyway as a prevention, and I wondered that too, but the Doctor explained that this procedure is a big operation, and is only ever carried out as a last resort. Luckily for me, at this time, it is not required. I am forever grateful to my consultant and the neurosurgical team for acting fast and having my best interests at heart.
This week has been full of highs and lows, thankfully, more highs than lows.
Since I started this blog, I have considered deleting it many times and hesitated to press post, in fear of negativity towards it. I have sometimes thought, what if people think I sound stupid and that people probably won’t read it anyway. I’ve lost sight of why I am doing it. I want to help others wherever I can, but not only that, I’m helping myself whilst doing it.
It may seem silly to some, but writing these blog posts helps me mentally, more than you’d realise, and for that reason, as well as a few reassurances from Jonny, here I am writing my 5th entry.
Also, this week it has come to my attention that someone has voiced their unwanted opinion. They think that because I had so many problems due to this condition following the birth of Harry, and also, that because I have gone on to have more children, I have infact brought all of this on myself! Hearing those words hurt and upset me, simply because I was shocked that anyone would think that, let alone say it out loud. True to life, people will always have an opinion, and in the end, all that is does is make me thicker skinned. I think it bothered me so much because of my own insecurities. I have often wondered whether people think I should have had more children or not, but it wasn’t for them to decide. Doctors have only ever encouraged it, and have always told me not to let my condition hold me back. What I fail to understand is why people say hurtful things, but if the boot was on the other foot, they wouldn’t like the same thing being said about them.
As the saying goes, if you have nothing nice to say, say nothing at all.
My life with IIH 