Tag Archives: stress

The impact of mental health

In a world that is frighteningly open as people regularly share their location, activities and even the contents of their lunch box via social media, there is still a huge reluctance to linger on anything that hints at emotional instability or mental distress; but the sad truth is that matters of mental health are a huge part of living with a chronic illness and not just for the individual concerned. Today is World Mental Health Day, a day that is seeking to raise awareness of mental health conditions in an open and honest way, to encourage individuals to understand more about how these problems can affect just about anyone at one time or another in their lives and how others can support them. There is a tendency to make light of the language used when referring to mental health issues, after all, how many times have we heard someone say that they’re feeling depressed about having to go back to work after a holiday or the break-up of a particular pop group1-in-6-wmhd, when what they really mean is that such events have saddened or upset them rather than the total immobilisation that comes when you struggle with depression on a daily basis. I am not devaluing the emotions they may be experiencing when those things happen, but are they really akin to the overwhelming nature of depression? I think not.

I don’t speak lightly as I have been dealing with the constant presence of recurring depression since my teenage years. I know what that “black dog” is like and just how much it can impact on your ability to function on a day-to-day basis in the real world. As a teenager living with T1D, I struggled with accepting that this was a reality that was never going to change for me, that the need for regular injections, sensible eating and facing the risk of serious complications was never going to disappear. I didn’t handle it well. Though few of my peers may have realised it at the time, I refused to do what I needed to do to maintain my health, not because I wanted to cause myself problems, but because I couldn’t see a way to live like my friends and not feel isolated by my T1D diagnosis. I know that I was not alone in my reaction to my chronic illness and my family and I owe a great deal to my fantastic consultant who worked hard to help minimise what often felt like insurmountable differences as I went through those troubled years. With time and support, untitledI did eventually come to terms with my diagnosis, though sadly my determination to get my T1D control back on an even keel brought with it an unexpected complication with my eyes, which in turn has led to even more serious implications than I could ever have imagined when I was 13 and feeling very much on my own in a battle against the rest of the outside world.

Move forward a few years and I found myself back in the mental health fight when I was diagnosed with post-natal depression following the difficult pregnancy and early arrival of M. This time I was more open to receiving help and my diagnosis, when it came, proved a huge relief as I didn’t have to actively speak out and ask for that support. Having struggled with counselling as a sole answer to my depression as a teenager, I readily accepted the suggestion from my GP that I be prescribed with low-level anti-depressants for the first few months and am not ashamed to say that those helped me through some very dark times indeed. Anti-depressants are not for everyone, just as much as counselling hasn’t always proved to be a success for me. There should be no stigma attached to needing that medicine to survive the battering of a mental health problem. It is a necessity for some, just as insulin keeps me alive or a feeding tube and elemental feed proved to be what M needed to help him regain better health.

I have learned over the years to identify when I start to feel a little low and my ability to cope with the everyday becomes more of a strain. Mike and my Mum have developed their own sixth sense to pick up when I am beginning to struggle and offer me their unfailing support as I try to find my way back out of the pit. Our 7 year journey to get an initial diagnosis for M and the ongoing challenges in keeping him fit and well have taken their toll and there have been times when tempers are frayed and relationships fractured because of it. 1-in-3-traumatic-event-wmhdThat strong support network of family and friends who are constantly surrounding me is invaluable and the knowledge of what is really important – M and G – keeps me getting out from under the duvet every morning and making my way through each day.

Even more importantly, my own experiences with chronic illness mean that I am well-tuned to the impact that his own diagnosis will have on M. It is a frightening reality to face that your own child might end up fighting the same demons that you did at that age, but it also gives me an insight that lends a level of trust and understanding between M and me that is unlike the relationship he has with anyone else. I can fully empathise when life seems unfair and unjust and he can allow his emotions to pour out because he believes that I get it. We have long been arguing for psychological support for M and finally, thanks to a developing shared care relationship with our local hospital, that seems to be being put in place. Our new gastro consultant has fully acknowledged that the EGID diagnosis will have not only shaped the person M has become, but also had an effect on G and on our family dynamics. He wants to adopt a holistic approach to treating M and the next few weeks will tell if that is a solution that will make a significant difference going forward. I know that recognising the signs of mental stress now are really important when it comes to M’s ongoing mental health, especially as there can be no denying that he already struggles with mood swings, anxiety and feelings of isolation, not just due to his EGID, but also because of his dyslexia and dyspraxia. Early recognition of those symptoms will help us and the medical professionals find a way to put into place coping mechanisms that will serve him, not just now, but into his adulthood too. He already has a good cohort of friends surrounding and looking for him, but they are young, only 10 years old. Just as with any other child as they grow up, he will learn to distinguish those who will stand by him through thick and thin and those who are just there for the fun times. Most importantly to me, 70300is that he doesn’t feel ashamed or embarrassed by the times when he’s not able to cope emotionally, or mentally, or even physically with the pressures that his diagnoses will have on his life, and that he learns to openly acknowledge them; and that he realises that he’s not on his own in that regard.

Likewise, we can’t ignore the reality that having a chronically ill sibling has a massive impact on G and her mental health too. The Young Carers meetings that she has attended over the last few months have covered the areas of anxiety, facing fears and anger management, which are all inextricably tied up with the role of being a young person caring for another. Those sessions have taught her strategies for dealing with her yo-yoing emotions and provide an outlet for them in a safe and understanding environment. She has made stress balls and relaxation jars to bring home and use as she needs. I hope that the proposed psychology appointments at our local will not only look to support M, but also to help G in her own right as well as us as a family. These are all things you don’t want to even consider that your children might ever need to deal with, but there is no escaping the reality of chronic illness and mental health, and we need to accept our responsibility to help them both. That is the key message of today’s World Mental Health Day – that we all have a role to play in supporting those around us as best we possibly can.black-dog-step-on-you

Advertisements

“Barry Broken Bones”*

It’s currently 5.10am and I’ve been sitting awake on the surgical ward of our local hospital since M woke in extreme pain at around 3.15am. He has finally dropped back to sleep, but it looks like I’m going to be surviving the next 24 hours on just 3 hours of unsettled sleep. The last 24 hours have passed in a blur and certainly our day didn’t end as it started out. big-play-barnWe’re halfway through the Easter school holidays and, with my Mum on her travels once again and me committed to work, Mike has taken some time off from his job to be on childcare duties for the duration.

The plan for the day was a popular one with M and G alike – drop me off to my office, back home for a quick breakfast, packed lunch prep and bag pack, and then head off to a nearby play place and farm – one of M’s all-time favourite places to visit when time allows. Day out done, it would be home for a spot of homework and maybe some TV before the return journey at the end of my work day to bring me home just in time for dinner. Timed to perfection, it promised to be a fun, busy and productive day for all concerned. The first I was aware that something untoward had cropped up was the phone-call to my office during lunch-time. A phone-call from G. The type of phone-call no parent wants to receive out of the blue:

Hi Mum, it’s me. Dad just wanted me to call and let you know we’re having to take M to hospital…”

Cue vivid flashbacks to a sunny day in Cornwall when M was 4 and the sounds of G pounding on the car window whilst Mike carried a screaming M in his arms and the ensuing drive in something of a blind panic to the nurse-led unit at Bodmin before an ambulance trip for 2 to Truro.

The partial facts I was able to extract from her at that point told me only a fraction of what I wanted to know, but it was enough to cause my heart to lodge itself in my throat and remain there for the rest of the day. With the news that M’s leg had been hurt and needed to be checked in A&E, the remnants of my lunch were pushed to one side and I worked hard to suppress the anxiety that I could feel creeping up in an attempt to catch me unaware all too frequently. I spent the rest of my afternoon in a state of mild shock, feeling nauseous about what might have happened and watching the minute hand tick slowly by as the tension started to build. It didn’t help that neither my office or our local hospital has great mobile phone signal meaning that it was near impossible for Mike and I to communicate in any effective fashion. I did manage to somehow stay focused enough to complete my day and finish some work during those long waiting hours, though the quality, accuracy and sense of that work will only be revealed once I’m back there. After what felt like hours, I finally gave in to my anxieties and called A&E, where, by complete chance, I managed to catch Mike just as he was about to leave with the children. Despite M’s severe pain, the nurse assessor felt confident that the lack of swelling and no discernible sign of a break on thorough examination indicated it was just badly bruised and some judicial doses of painkillers would soon see him back on his feet.

Now, the fact that I’m currently writing this by the light of my phone on a noisy hospital ward will probably tell you all you need to know and that the story didn’t end there. Not even close. By the time, I had been rescued from my office and we reached home, M was unable to put any weight on his foot and was screaming from the excruciating pain. He was rating his pain levels at approaching a 10 out of 10, which we knew meant this was far more serious than originally thought and his pale, strained face reflected that fact. IMG_0301[1]With very little debate and a hurried phone-call to A&E, we were soon back in the car and heading to the hospital, this time determined not to leave without an x-ray. The nurse assessor admitted on the phone to Mike that she had been reflecting on M and regretting discharging him without an x-ray, so for once we were happy to be visiting our local A&E again.

Within the hour, and obvious from the very first x-ray, we had our answer: M has a nasty spiral fracture to his left tibia. That has led to a full length leg cast from mid-thigh to toe, a considerable amount of tramadol, paracetamol and ibuprofen and an overnight stay for 2 on the surgical ward for observation. It’s been a difficult night as once again G has been sidelined whilst M heads into hospital, though this time the proximity to home has made it so much easier and she has been a superstar throughout. M’s pain has reached new levels of awful, though even then, as he lay sobbing in his hospital bed, he wouldn’t rate it as more than a 9, or possibly a 10, proving once again how accustomed to chronic pain he has become.

IMG_0302[1]The next few weeks are going to be tough and not just because of his broken leg. M is going to have to find a fortitude he’s never had before as he misses out on a much longed-for dream because of it. He is extremely disappointed, but courageously trying to take it in his stride, with the smile on his face we all know and love. I can see the hurt deep in his eyes, but we will hope that something even better comes from this disaster. What saddens me even more is that he really has been the victim in this situation. His broken leg is not due to careless or reckless behaviour on his part, but down to the action of another child. A child who probably has no idea of the physical damage to M’s body, let alone the other far-reaching consequences of his violence towards my child. I’m still reeling from the shock that a child of a similar age could cause such injury; disturbed that a family could leave without checking on his well-being and left hoping that my children don’t lose their beautiful skill of making friends of strangers wherever they are, even though the consequences can unbelievably be so devastating. I fear that this incident will leave an emotional scar on them both that will take a long time to heal.

*M’s leg might be broken, his dream in tatters and his confidence knocked, but at least 1 thing is still in tact – his sense of humour. In the wee small hours, whilst floating on a cloud of entonox, M decided that this needed to be his new name! That and he’s keen to investigate the price of a cow…

The Mystery of the Missing Bed

It sounds like one of the Enid Blyton stories that my children have been listening to at bedtime recently.  M and G have been loving the adventures of Fatty, Buster and the rest of the Five Find-outers gang, but this was a mystery set to challenge even the hardiest of intrepid adventurers.

Having received our summons to GOSH less than 24 hours earlier, and laden down with suitcase, backpacks, Lego advent calendar and the ever-present Cat, M and I found our way across London, through those infamous front doors and up to the long-term gastro ward.  We approached the nurses station and were greeted by a bemused looking senior staff nurse, who seemed uncertain as to who we were and why we were there.  I gave her M’s name and that’s when a look of complete panic swept across her face.  His name wasn’t on her master list, she hadn’t been expecting him and at that precise moment of time, there was no empty bed ready and waiting for him.

With profuse apologies and a promise to get hold of the ward administrator, the nurse in charge and the bed manager, M and I were left, with our bags, in the somewhat small and cramped playroom, whilst the mystery of M’s missing bed was investigated.  After the early start to our day and an emotional goodbye to G, I barely held it together as I called Mike with a slight hysterical edge to my voice. The play co-ordinator found a circuit board kit to entertain M and I got chatting to another patient and her Mum, who had just been turfed out their room and were waiting to hear where they were being moved to.  We all sat there for nearly 2 hours, whilst those in charge negotiated, discussed and settled the bed situation for all involved.

Courtesy of en.wikipedia.org

Courtesy of en.wikipedia.org

I might never know why the mystery of the missing bed happened or how it was resolved to everybody’s satisfaction, but I’m delighted that, thanks to the hard work of the nurses and the obviously determined look on my face that meant I wasn’t going to take no for an answer, M’s bed miraculously appeared in the “bay” and we could finally get ourselves settled in for the duration.

Waiting

Patience is a virtue, or so the saying goes.   I’d always thought of myself as a relatively patient person, but maybe not.  And definitely not when it comes to waiting for a hospital bed to become available and for testing and treatment to start.  Another week of waiting is over and a new one is about to begin.

 

#awatchedphoneneverrings

#awatchedphoneneverrings

Whirlwind week

Having written my last blog about finally making the big decision to request that M has more scopes done, we settled in to what we assumed would be an inevitable wait for the appointment to be made.  Having been told 6-8 weeks, I studied the calendar and figured out that 6 weeks would be right in the middle of October half-term and, knowing that there was no chance that we could be that lucky,  assumed that instead we were looking at a date in the middle of November.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

A week after Mike had spoken to the registrar at GOSH, I received a call from the pre-admissions nurse, S, to talk through M’s notes and agree the arrangements for the scopes.  I was reassured to learn that M’s notes clearly state that there is a problem with him coming round from the anaesthetic and S suggested that, as a precaution, he be admitted to Kingfisher Ward for 2 nights to allow close monitoring as he recovered.  We discussed the possibility of a pre-med, which is supposed to calm the child before they are given the anaesthetic.  She felt this might lessen his reaction, though I was warned that there is a risk that it can have the opposite effect and might make him more aggressive.  We agreed that I am open to him taking it, but will discuss it fully with the Consultant Anaesthetist the day before.

However, not unusually when it comes to M, there have been some added complications due to the chronic constipation and impaction he had over the summer. GOSH wanted to admit him for a week into our local hospital to have a fairly heavy bowel prep done – they need to monitor him to ensure he doesn’t get dehydrated plus insert a NG-tube to give him the meds as it seems unlikely that he’s going to be co-operative about taking 4 litres of a “vile-tasting laxative” (the words of the medical staff, not me!).

Mum had some holidays booked during the 6-8 weeks and I had my fingers crossed that the dates wouldn’t clash as G would be staying with her whilst Mike and I stayed up in London with M.  S confirmed that she thought the appointment would most likely be in mid-November and that the admissions team would call me within the week to confirm a date.  All seemed to be going to plan and I informed both school and work that the appointment would be coming up and that I would let them know as soon as I had a date.

And then last week, the whirlwind hit.  Hold on to your hats, this could be a bumpy ride.

Courtesy of m.flikie.com

Courtesy of m.flikie.com

Friday afternoon 2.30pm – Phone-call from GOSH to say that the proposed date has suddenly become, not 6 weeks away, but rather the week after next, just 10 days notice for all concerned.  No time to confirm what the position with our local hospital was, that will have to wait until Monday.  Let school know that M will be away for the week and ask if they could organise some work for him whilst he’s there – I know, mean Mummy!

Weekend – Confirm arrangements for G.  Mum not away that week, so G can stay with her and stick to her normal routine as much as possible

Monday 10.45am   Speak again to S, the pre-admissions nurse, who has yet to phone our local hospital, but who has a doctor on hand at GOSH to argue our case.  Given M is supposed to be admitted there on Wednesday, it all feels a bit tight and needless to say, stress-levels are slowly rising.  Suddenly, the 3 days off work and school have become over a week, but still just about manageable as I can do the school-run and so on with G.

Monday 1pm – GOSH doctor calls to confirm some further bits of information including the name of our local consultant (we don’t have one) and which ward M is normally admitted to locally (he’s not).  Assured this won’t be a problem and that either she or the local hospital will ring later to confirm when I need to get him there.

Monday 6pm – Phone-call from S to say that the local hospital has refused to take him and so we’ve got to move to Plan B – getting him admitted into GOSH to have it done instead. No idea whether they’ll have a bed for him or when they want to admit him. They need to review the abdominal x-rays done over the summer (by the local hospital!) to see whether he needs to be in the full week or not.  Someone will call tomorrow to let me know.

Tuesday 9.30am – Wondering what time GOSH will call and hoping that it’s good news. still waiting

Tuesday 12.45pm – Still waiting to hear

Tuesday 3.30pm – Still waiting, but hoping they don’t phone whilst I’m on the school-run.

Tuesday 4pm – Following call from Mike to see if I’ve heard anything – doesn’t he know I’d have rung him if I had? – decide to call and leave a message for the admissions nurse.  She is amazingly, wonderfully supportive and has reassured me that she will come up with a Plan C if needs be, though goodness only knows what that will be!

Tuesday 5.15pm – ARRRRGGGHHHH!!!  Appointment cancelled as GOSH can’t find him a bed for the week.  Profuse apologies from S, who tells me she’s turning grey trying to organise it for us, but that admissions will phone me tomorrow to set up a new date.  They’re not going to bother with the local hospital at all, I’m guessing they’ve been unco-operative which fits our experience of them, and instead will do it all at GOSH.

Tuesday 6.30pm – You really, really couldn’t make this stuff up!  Phone-call from S, as I’m en-route to taking G to her gymnastics lesson, to say that they’ve found him a bed for next week and so it’s all back on.  Can’t confirm what time we’ll need to be there on Monday, so I’m now planning on M and I travelling to London on Sunday.  She will phone tomorrow to confirm all details.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Wednesday 11.45am – Hurrah!  Get the champagne flowing, we have lift off.  Final confirmation that M will definitely be in from Monday 10am, no ifs, buts or maybes left.  S has been a star and has promised to come visit us once he’s on Kingfisher ward on Monday.  I can’t wait to meet her and say a huge thanks for persevering with getting this all sorted.

Now, I’m off to work out what we’ll need and how we’re getting to London next week.