Tag: anxiety

Fear

On By huntersmumIn family4 Comments

Fear. It creeps up on you, doesn’t it?

The whole situation with coronavirus has been a perfect breeding ground really.

I’ve written before about how my anxiety levels seem just naturally higher these days. It started when becoming a stay at home mum: my horizons narrowed and I was no longer pushed to do things that I found stressful. A few years later Pudding’s diagnosis came and things suddenly became that much more limited and worrisome.

And then a worldwide pandemic. Boom! Horizons reduced even further. We’ve been lucky: our home and garden have been very much a safe space for us. With the exception of sporadic trips out for exercise we’ve pretty much stayed put. Yet now shielding advice has been changing and I’ve known for a while that I’d need to venture out into the world again.

Scary.

Logically I know that the risk of me catching anything on a quick trip to the shops is minimal. I can tell myself that till I’m blue in the face. But of course brains don’t always work like that. Logic doesn’t always win over fear.

Last week I beat that fear in a small way. I stepped inside a building other than my house for the first time since the 21st March. It was only taking a parcel to the post office and I’d already paid the postage online. There was one other customer in the shop and it actually wasn’t at all scary.

We will definitely not be going wild and having a family trip to the pub anytime soon, but it felt like a positive step taken.

And then, this weekend the fear bubbled up again. Or should I call it anxiety? Sometimes I know exactly what has triggered it: an argument on social media, a TV programme I’ve watched that has touched a nerve. Sometimes it takes me a while to pinpoint what the cause was.

This time it was a letter received from the government on Friday – a letter that said Pudding is still considered to be in the ‘clinically extremely vulnerable’ group and should remain shielding until August.

cuddle

I know that those letters aren’t always accurate (see below for the explanation) and I know that his consultant was happy for us to start easing into normal life a little more. But I’m obviously well conditioned to respond to authority, despite my reservations about the current government, and that letter tickles all those ‘but what if…?’ nerves.

Logic taking another little holiday.

Well, the weather this weekend hasn’t been very conducive to getting out anywhere anyway. So I have been doing the next best thing – plenty of cuddles with Pudding. Very much like a therapy pet, it is impossible to stay stressed for too long with that soft, warm snuggly body pressed into you.

Fairly difficult to breathe too when he’s lying on top of you, but I’ll take that side effect any day!

 

Shielding letters: at the start of lockdown consultants helped identify groups of patients that could be most vulnerable to the effects of Covid19. All diseases/conditions are described by a code – a bit like the Dewey Decimal system for books. So Pudding’s condition would come under Inherited metabolic conditions, then lysosomal storage condition, then mucopolysaccharidosis, then MPS II Hunter Syndrome. (Don’t quote me on this by the way – I’m not sure of the exact breakdowns, but using this just as an example.) But when the NHS database was accessed in order to send out these letters the data was not able to be broken down in such detail. Therefore, rather than sending out letters to patients with Hunter Syndrome who also have particular risk due to airway issues, a much wider group of patients were targeted. If you have a shielding letter but are not certain whether it should apply to you or vice versa, I’d recommend talking to your consultant to get more individual advice.

Why MPS Awareness now?

On By huntersmumIn fundraising, Uncategorized6 Comments

A couple of days ago I wrote on Twitter that it felt strange shouting about MPS Awareness Week at a time like this. After all, why should anyone care about a rare condition that no-one has ever heard of, when they’ve all got their own worries at the moment?

But the more I think about it, the more relevant it does seem.

I suppose it also follows on from my last post – Trapped – that I’d completely forgotten about until coming on here just now. (Unsurprising. It was written a whole two months ago.)

Covid-19 has brought the whole world to a standstill. Normal life no longer seems real.  People are worried about the future, worrying about whether they can still work. Dealing with stomach-churning anxiety when doing the simplest of tasks. Stuck indoors and isolated from everyone else. We clap the NHS every week.

Welcome to the world of an MPS parent.

IMG_20170109_180120Listening to the emotions that many are going through during lockdown brings back memories of the time we were first told that Pudding had MPSII (Hunter Syndrome). It was a bombshell, rocking our world. All plans went out the window. I felt like I was stuck on a rollercoaster, my heart constantly lodged in my throat and life became more about hospitals and than school sports days, and NHS staff became my heroes. As time went by, Pudding’s behaviour often made it easier to stay at home away from other families who would point and make rude comments. Isolation among MPS families (as with others dealing with disability) is common.

But the analogy doesn’t hold up for long.

Covid-19 is a horrible virus, that spreads easily and has caused many deaths. But we will see an end to the chaos eventually. Scientists are working flat-out on vaccines and treatments. And until then, unless you are in one of the vulnerable groups (which include many people with MPS) there is a good chance that you will pull through.

Some types of MPS do have better treatments right now. But particularly for those with progressive MPS 2 or 3, once the crisis of Covid-19 is over, the future still doesn’t look bright. Once we have been handed that diagnosis we know what the future will bring, and it is not one that any parent wants to hear.

I don’t mean to underplay this trauma that everyone is going through right now – after all, we’re going through it too. But I hope it explains why I will still shout louder about MPS awareness at this time.

Please join me on Twitter or Facebook on the 15th May in wearing blue (or purple internationally) – we’d love to see your pictures.

Trapped

On By huntersmumIn family1 Comment

We can’t go anywhere or do anything that I want to. You can forget about lazy foreign holidays or trips around historical sites. Life will just carry on around us and we’re stuck. Stuck in a rut that will only end in the worst way.

No I’m not talking about Covid-19, but my state of mind a few weeks ago. Although I do bumble along quite happily most of the time, the lows are still there and seem to hit harder sometimes simply because they take me by surprise.

This time, although I knew I was feeling miserable, I just couldn’t see that I was being unreasonably so. I was in a hole and couldn’t see my way out and when that happens logic flies away and it’s impossible to reach out for help. What’s the point? Nobody can help. Nobody cares. 

I was worrying about some aspects of Pudding’s care, but not sharing concerns with Hubby – he’s got to keep working to support us and doesn’t need more pressure on him – and at the same time resenting him for not knowing. And I was losing sleep over little things that I had no control over.

Like I said, logic doesn’t hold much sway.

So what snapped me out of it? A blogger friend of mine, Gemma from Isla’s Voice checked in on me as she often does. Just a simple message asking how I was doing. Maybe it just came at the right time to find a way through my barriers, but I found myself letting some of it out and sobbing as I wrote back to her. That night I was still holding the world at bay, but Hubby came and gave me a hug. Often when I’m feeling emotional/angry I’ll escape from contact as soon as I can, but he held on and my walls came tumbling down. I cried. Messy crying.

We talked. And the world became infinitely better again.

But it wasn’t until the weekend and our walk in the woods that I twigged what one of the main contributing factors had been. (I’m supposed to be intelligent, but hey…) No wonder I was feeling trapped. It’s not my family that is the problem. It was the weather. We had been pretty much trapped in the house every weekend for the last month by regular storms. Not easy to wrap up and head into nature when you’ve got wheelchairs and poor balance to consider. And I DO really need a fix of nature every so often.

Of course with coronavirus complicating the world right now, social distancing and self-isolation are the key words being thrown around and we may end up having to stay in again. But spring is around the corner, the weather is improving, and the garden desperately needs some work. I am determined not to feel trapped by this.

I only ever really write about our own story. I’m no expert and don’t feel qualified to preach to others or give advice. All I can say is that reaching out to others really can make a difference. Maybe not every time. Maybe sometimes you’ll be pushed away. But just maybe you’ll be the right person at the right time and you can help them out of that hole.

Circles

On By huntersmumIn family2 Comments

At this difficult time, my mind has been turning circles: reading up on options, moving towards a decision, learning more, wavering again. Yet strangely, I am finding it easier to deal with than the period just after diagnosis.

After diagnosis, when we first heard the word mucopolysaccharidosis, the bottom dropped out of our world. Learning that our little boy had a progressive, life-limiting condition left us reeling with shock, anger, grief, guilt…the lot.

You may have seen that diagram of a line showing what we think grief looks like, and then a tangled scribble saying this is what it is actually like. (Sorry, I don’t have a copy and wouldn’t know who to credit if I redrew it myself.) Well, that’s what it also feels like going through this journey. Emotions really aren’t linear. They’re complicated; overlapping and folding back in on themselves, circling round, revisiting you when you think you’re already done with that one. Ebbing and flowing. And over time, I’ve found them easier to deal with.

So even though we’re making this life and death decision for Pudding, it is with four years of experience behind us and without that paralysing shock punching into me every morning when I wake up unawares.

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My brain is full of ‘what if’s and consequences but I can still laugh with my friends and have funny conversations with T on the school run. Seemingly simple tasks like booking a taxi are sending my underlying anxiety into stomach-churning levels, but yet I still managed to sort out my hoe insurance ten days before the deadline. I may find it hard to concentrate on planning meals, but can still enjoy eating. I need a hot water bottle at night to ease those tense muscles, but my mind has mostly let me sleep.

The world keeps on turning and another aspect of my life has circled round to bring home how far I have come. I’m rehearsing for a play at the moment, and it’s being directed by the same person as the play I was in at diagnosis time. I have always loved acting – the chance to step away from real life and be someone else – but back then it was tough. Everyone was very supportive and there were numerous times when I had to leave the rehearsal room to go and cry by myself. But now? Well the play is pretty challenging, dealing with family relationships, love and loss and I am finding it quite cathartic in a way – I may not be able to shout and scream at MPS in real life, but I can channel that into my character.  And though they may know I have a disabled son, I doubt most of the cast have any idea of what we’re currently facing and that’s the way I’m happy for it to be. I would do anything for my Pudding, but I also need to be just me sometimes. An ordinary person doing ordinary things.

And as for the future…? We have probably made our decision, but we’re sitting with it for a while, to check that it feels right. All your messages of support and love for Pudding really has helped, so thank you.

Decisions

On By huntersmumIn medical17 Comments

This is a decision no parent should have to make.

This is a decision that I always knew we might face sometime in the future. But not yet. Not when Pudding is only seven and a half years old.

I knew it wasn’t going to be an easy meeting in Manchester last week. Not when the consultant asked to see both Hubby and I. That’s obviously not a routine appointment; it’s decision time.

Essentially, the treatment we tried in June to reduce the antibodies Pudding has towards his treatment has not made any difference. The stronger a body’s reaction to the treatment and the longer one has antibodies for, the harder they are to get rid of. Pudding has a complete gene deletion, so the enzyme is completely foreign to his body. And he has had antibodies since at least February 2017, probably longer. So there’s a double whammy.

Some families in America that I know of have, even with a complete gene deletion, successfully eliminated antibodies. So I have of course been reading up and learning as much as I can about the options out there. It seems to boil down to a long course of more toxic drugs or daily/twice-daily infusions. Both of which could potentially be for years. Or for ever.

The problem is, as always when talking about rare disease, that the numbers are small. I can’t look at the figures and say 100 people tried this and 75% were successful. We’re talking ones and twos.

Pudding sitting on the floor by hospital ward doors.Pudding has already been on a clinical trial for three and a half years. It seemed like the right decision at the time to put him through more medical interventions even though there were no guarantees. Given the hope that it offered, it was worth the time and the risks.

Of course it hasn’t turned out to be an entirely positive experience for us as we have watched him gradually lose skills, known about these antibodies since last year and yet been unable to treat them.

And now…

We have to decide whether to put him through more. Or to say enough is enough. Quality over quantity. More treatment over living life as it is now. Knowing that the choice of doing nothing will mean accepting the inevitable course of Hunter Syndrome – decline and death.

To be honest, it’s a pretty shit choice.

There are so many factors to consider – risks, benefits, side effects, damage already done, family life. My head is spinning with information and every night when I go to bed I realise quite how tense my body is. I just don’t know how to make a decision like this. How to know we’re doing the right thing. None of the options feel like the right thing. Whatever we choose there will be somebody who says, ‘You chose wrong.’

And the thing I am most scared of, is that it will be me saying that.

 

Control

On By huntersmumIn medical6 Comments

I’ve not written a ‘proper’ blog post in ages, and it’s not for lack of stuff to write: I’ve started this particular post a number of times but it never quite comes out how I want. When I started this blog in 2015 soon after Pudding was diagnosed, the words poured out of me. All the fear and guilt and anger and devastation just had to make it onto the screen in any which way. I barely even had to think about what I was writing, whereas now…things feel more complicated.

This year so far has been one of contrasts. After a very stressful first few months we had a great summer, and I think it can be summed up with one word. Control.

I remember reading an article many moons ago about stressful jobs. It may seem counter-intuitive, but it was saying that the most stressful work wasn’t what you might think. It wasn’t necessarily those in high-powered careers who suffered the most, but those people who had the least control over their work environment. The people who have to react to what’s thrown at them with little or no control over their situation.

Over the last few months I’ve come to realise that this what many of us go through when parenting a disabled child. Before anyone gets upset with me, I don’t mean it’s the child themselves that is the problem. It’s all the other things that impact on our lives  – the lack of accessibility, the fight for support, the forms, the waiting for school places and the never knowing what the future will bring. The control that politicians, budget-holders, pharmaceutical companies have over our children’s lives. That knowledge that your precious wonderful unique child is, to them, a figure in a spreadsheet or just another service user.

When I was writing one of my updates on Facebook recently (come find us here if you haven’t already!) I used the word trauma and then wondered if I was being guilty of over-exaggerating. But actually I don’t think I was – consistent lack of control over your situation IS traumatic.

I never know much about what Pudding is thinking, but it’s pretty clear that the same is true for him. When he can decide where he’s going, or what he does – when he is in control – he is happy.

OLYMPUS DIGITAL CAMERAFor us, the main issue has been Pudding’s health. Not his health now (anyone who sees our photos and videos knows that despite his life-limiting diagnosis he still remains ridiculously healthy) but what is to come. We’ve known since February last year that his body was producing antibodies against the enzyme replacement treatment. Yes, antibodies against that very treatment that is meant to be keeping him alive.

We had to make a difficult decision about whether to go ahead with immune modulation drugs which could result in side effects or increased risk of serious infections. There were also other considerations that had a huge bearing on our decision that I still don’t feel able to talk about. All I can say is that it was a time of agonising changes of mind. How to make important choices on not much information? How to keep going when other people hold all the cards? How to know that we’re doing the right thing when any impact could take years to show what the true benefits have been?

In June we went ahead with the immune treatment – four visits to Manchester over two weeks (four injections and two infusions). Pudding was of course a star, taking even more medical interventions in his stride despite not liking them. Then the waiting started.

The summer has been almost a honeymoon period. With plenty of respite in place for Pudding allowing us to concentrate on fun things with T, and with hope that Pudding’s future was a bit more assured, I felt like I was back in control.

But that assurance is starting to wobble again. Latest results from blood and urine tests have not been very positive and more decisions will be needed soon.

 

House move

On By huntersmumIn family6 Comments

I’ve mentioned this before in passing but not really said much as I don’t want to jinx it going through. But as it has sort of been taking over my life I guess it’s time to rectify that.

When I’ve mentioned the perils of moving to friends, a few people responded with the fact that moving house is meant to be one of the most stressful life events. I usually replied jokingly that diagnosis of a life-limiting illness tops that. But the reality is that the arrival of MPS into our lives has directly affected how stressful I’ve found these last few months.

Life is generally full of peaks and troughs of stress and emotion, but since Pudding’s diagnosis my underlying stress has been reset to a much higher level. While I can cope with the usual everyday stuff, anything extra on top of that has become so much harder to deal with.

The difficulty of keeping the house tidy for viewings (anyone with children will understand that special pain), the disappointment of the first two offers falling through, the endless forms and legal stuff have all taken their toll. And joy of joy, stress has blossomed into the new symptom of anxiety.

Mental health has become much less taboo to talk about but it still feels hard to admit how I’m finding it. Logically I can reason with myself that the sky won’t fall in if I can’t find a particular document, but yet every time I have a communication from the solicitor my body reacts. I now only have to see notification of a new email for my heart rate to go up and it becomes more difficult to breathe. Of course, 9 times out of 10 it’s something else entirely – a harvest festival letter from school or the latest sale on at my favourite shop. But each time, that anxiety builds and some days it is immobilising.

We are hopefully now getting to the end of the process and will be able to exchange contracts soon. And I am trying to focus on the positives. The house we going to has more room inside and out for Pudding to play in (and for T to escape from him when he’s hitting). We’ll have the potential for a downstairs bedroom if we need it. The cul-de-sac location means less chance of him being in danger if he escapes. And a detached house means that I need worry less about noise.

OLYMPUS DIGITAL CAMERABut still those fears nibble away at me. ‘It can all fall through at the last minute’. ‘You’ll have to start all over again’. At least one bonus about our current health concerns is that Pudding seems to have stopped getting much taller at the moment, so is less likely to grow out of his current bed and small room… Maybe another year in this house is possible. And I won’t yet have the wrench of leaving the house where both my boys were born. (Technically as we’re taking the rug with us I could still point and say “that’s where it happened”!) Though I’ve already had the tears when I painted over their height marks on the wall.

Cross fingers I’ll be able to share more positive news in the next few weeks and hopefully my emotions can get back to a more even keel. In the meantime, thank god for cuddles and fun with my little Chucklemonster every evening. There is a lot to be said for living in the moment!OLYMPUS DIGITAL CAMERA

Sorry, this post has been a bit of an emotion dump, but do you know what? I’ll probably feel better for having written it, so no apologies to anyone who has had to read it!