Category Archives: Health

Question mark

4 essential questions that could literally change your life

No matter where you are in the world, we’ve all been through some sort of lockdown as the Covid-19 pandemic hit and these measures are now being lifted. Are you someone who’s desperate to “get back to normal” or did you appreciate lockdown more than you expected?

There’s no doubt about it (unless you’re a conspiracy theorist) we needed the lockdown measures to keep us physically safe from the virus spreading through the population. Some people found the extended period of rest had a positive impact on their mental health while others struggled with loneliness, isolation and increased anxiety.

Everyone had a unique experience – it’s important to remember that and value it. Whether you found it easy or hard, you can’t compare your experience to the next person’s because their set of experiences, no matter how similar they appeared from the outside, were unique.

My lockdown involved experiencing discrimination at work despite me (unusually) finding my voice to explain what I needed. But because of this, I had to look for the positives! Of course I missed my family and friends but I’m an introvert so I loved having some space to do my own thing and I’ve even developed some new skills!

So this brings me to the 4 important questions:

What did we gain during lockdown that we want to keep?

Woman in yoga pose with candles

I’m not talking about any material thing, it’s more likely to be something you spent time doing. What did you allow yourself to do that you didn’t previously? I started practicing yoga regularly and I couldn’t believe how much it benefitted my mental and physical health.

Strangers were more considerate, communities worked together, our church had to start doing a lot of things differently – this wasn’t such a bad thing! We learnt a lot! We started to appreciate the little things in life – we can’t hold onto some of this…

It would be all too easy to “go back to normal” and lose the good that lockdown brought us. Think about the positives that it brought and try to incorporate them into a new normal.

What did we gain during lockdown that we want to lose?

There may be all sorts of things that unexpectedly occurred that we’re hoping to discard now, this may be easier said than done. Some may have had to work from home and want to return to the office (we may not have a say) or home schooled children may be busting to get back to the classroom!

Young woman in glasses, greyscale photograph

There may be more subtle changes that crept in, that you might not have even noticed at the time. With a lack of fresh air, exercise and variety many struggled with unwelcome insomnia. Perhaps anxiety, low mood or other difficult feelings have been problematic. We all have a preferred coping mechanism when things get tough such as eating more, drinking more or have you found yourself surfing unsavoury websites? Some coping mechanisms may be more accepted by society but that doesn’t mean they’re ok – only you can decide if your behaviour is something you want to change.

What did we lose during lockdown that we want back?

Young child being hugged

Obviously we all lost our freedom and we’re getting this back but what else did you struggle without? Most people will want to hug their friends and family as soon as it’s permitted.

Isn’t it amazing how much more we value something once it’s taken away?! If there’s something you now appreciate more than you did before, make sure you don’t take it for granted again!

What did we lose during lockdown that we don’t want back?

Lockdown was imposed on us but there’s no reason why we can’t take advantage of a bad situation! Something I was very glad to lose was the crowded supermarket! I was very happy to queue outside for a short time if it meant the atmosphere inside was quieter and calmer. (Unfortunately, I have no say over this now and the consideration I used to see has all but disappeared.)

Crowded train station

The planet certainly breathed a sigh of relief as we travelled less, any driving I did as a keyworker was easier with fewer idiot drivers on the road – wouldn’t it be great if we could all learn from this and continue in this vein?!

Perhaps homing working has helped you realise that you hated commuting? Or did our I forced shut-down show you that you were doing too much and you need to cut back on your commitments? Do you need to put yourself first a bit more?

Perhaps lockdown has taken its toll on your mental health, as it has done for 80% of the population. If you need help coming to terms with anything that’s happened, help is available – it’s really important to talk. Some people find talking to friends or family really helpful while others need to talk to a professional.

Rememeber, you are not alone, there’s aways someone who can help.

Multiple medications coming out from a pot

Trying new medication update

This blog follows on from one I wrote recently about Weight up the benefits of trying new medication for the severe chronic neck, back, shoulder and arm pain I experience due to spondylosis and fibromyalgia. Short story – it didn’t go well, I was that 1 in 10 who experienced side effects.

Longer story

The medications I tried were a muscle relaxant and an anti-epileptic drug to treat my neuropathic pain. Both of these had a fairly similar side effect profile but had been recommended by my consultant at the pain clinic so I was hopeful.

I titrated both medications up each week and started to feel some benefit. I kept a really detailed diary of my symptoms and possible side effects. Given that the side effects are really similar to the symptoms I suffer day-to-day, it’s very difficult to tell the difference but I had a couple of awful experiences.

At the highest doses I reached I actually started to feel so dizzy I fell over a couple of times and was so sleepy during the day I was falling asleep at work. I considered pushing through because sometimes side effects like this only last a short time and wear off but I couldn’t function so I reduced the dose and realised that at the lower dose, I wasn’t feeling any pain killing benefit.

The worst adverse effect I had was when I had a teeny-tiny glass of wine, I experienced feeling drunk for the first time in my life! Let’s just say, my mind-body connection wasn’t functioning as it should – not something I will ever repeat willingly.

It’s really difficult to have experienced such an adverse reaction like this. Before I had a drink I didn’t feel particularly sleepy so thought a tiny glass would be ok. I rarely drink so I’m always carefully not to have very much. Within about half an hour I was fast asleep and as we were at a friend’s house, my husband had to help me home as I could barely walk. Fortunately, my friends were incredibly understanding and it was a simple case of sleeping off the effect.

It just shows trying medication isn’t as straight forward as thinking does it work or not? We put an extraordinary amount of trust in the pharmaceutical company to ensure they’re safe. These medications have been put under scrutiny in medical trials but new side effects can occur. (Interacting with alcohol is not a new side effect but a strong reaction like this will be very unusual.)

It feels like such a balancing act for me with multiple medical conditions to consider. I was worried about weight gain in my last blog. That turned out not to be a problem – instead, I was plagued with more fatigue, feeling unsteady, nausea and sleepiness that made daily functioning impossible. The trickiest conundrum was working out whether the symptoms were side effects or my fibro playing up?! The only way I knew in the end was that the symptoms improved when I reduced the medication. (But even then, it still could have been a co-incidence because my fibro symptoms wax and wane!) It almost felt like a game but there was absolutely no element of fun!

At the follow-up appointment my GP booked I explained that these new medications had been unsuccessful and I would prefer to be on higher dose opioids despite the bad press they get. She supported my decision because she could see how much pain I was in and having tried the less conventional medications, she agreed, paracetamol and opioids would be a valid choice for me.

There’s a lot of hype, particularly in the US about “the opioid crisis” because of their addictive properties but used correctly, under supervision, my GP believes I’m not in an danger. The side effects are also a known entity and we can manage them.

With the medication I take to prevent my migraines, it appears to work for about a week each time I increased it but then I would stop feeling the benefits. After increasing and increasing…at last, I seem to have reached a beneficial dose (and no noticeable side effects); I’ve only had 1 migraine in the last 2+ weeks… This is a massive improvement on getting them everyday!

What’s in a label?

Some say labels are just for cans and boxes but why do people search for years for a label for their illness or disability? Why does it feel so important?

When a diagnosis is finally reached, there seems to be a sense of relief, maybe even satisfaction! Almost “I told you so!” Sadly, before this point, people worry others think they’re faking or exaggerating their symptoms. Without a diagnosis you’re just a list of problems. Before a diagnosis, phrases like “it’s all in your head” are used and the patient feels like no one believes them. Doctor after doctor has said “hum, I’m not sure; you say you feel like this, but the tests say you don’t.”

Finally, the label means validation.

Fibromyalgia is one of those illnesses that takes years to diagnose and people feel they’re not being believed, they’re pushed from pillar to post as their symptoms get worse.

The way I was given the diagnosis of fibromyalgia couldn’t have been further from what I was hoping. It’s meant to be a diagnosis of exclusion. Ideally, you would hear “We’ve done all the tests to rule out these illnesses x,y,z… and they’ve all come back clear, this is good news. (Pause.) This means, we’ve come to the conclusion, it’s fibromyalgia. It’s good, we now know what it is because we can begin to manage it. The way your symptoms are presenting (because they present differently for each individual) we’re suggesting these treatment options…”

In my experience, there are illnesses they haven’t excluded, numerous tests they haven’t done and the news was delivered, while prodding the joints in my hand (for no reason I could understand) “Well (sigh) it could be fibromyalgia”. That was it, they offered no support or treatment. “We might have a leaflet in the waiting room you could pick up on your way out…” they’d run out of leaflets…

Oh well, ignore how I got the label, what mattered was, I had it.

Fortunately, once I had the label, I was then able to find treatment options myself; I found a clinic in London (who only see people with a diagnosis) to get some advice; I had some group session with a physio and an OT and feel I can pro-actively manage the illness myself.

Reactive vs pro-active management

Understanding without a label

“But as long as we understand the difficulties, we just need to make sure individuals get the support they need.” Said a well-meaning nurse to me recently.

Understanding difficulties someone has and the support they need takes time and effort most people are unwilling to give. Understanding what an individual really needs takes knowledge, skills, expertise and often wisdom that most people just don’t have and time people are unwilling to set aside.

This nurse was supposedly reassuring me that they would offer me the support I needed for the difficulties I was facing in the office no matter whether I had a label or not… this supper never materialised… need I say more?

Why a label matters

With a diagnosis you get treatment options – before the point of diagnosis you’re crawling down a corridor of shut doors. At the point of diagnosis, a door finally opens. You’re finally allowed to enter the world of your given disorder and explore the “options”. All you’ve every wanted are “options”, that magical word! There may not be many, but before now, there haven’t been any!

Un-diagnosis can be lonely, with a diagnosis you can often find a community of people facing similar struggles, the support can be there if you want it. In this digital age we have forums of people literally at our fingertips. Just type your diagnosis in Google and there’ll be a Facebook group if nothing else! Sometimes giving support can be just as therapeutic as receiving it.

The mental health community is full of people who say “I don’t have a diagnosis but can I join…?” Of course, you don’t need a label to join but most people find it helpful to know for sure which label fits.

Sometimes the label changes

Sometimes clinicians get diagnosis wrong. Sometimes illnesses change. Sometimes diagnostic tests change or medicine gets smarter. For one patient this could be a traumatic and confusing process, for another it might be liberating.

Without a diagnosis, you may feel like a list of unknowns, more questions than answers. Why do I feel like this? Why do the tests show this? Who am I? What am I? Why is this? Things that don’t make sense and things that don’t add up. With a diagnosis there may still be lots of questions but some of them may start to have answers.

Your illness, disorder or disability doesn’t have to define you, that’s a choice, but a diagnostic label helps things make sense, is validating, answers questions, offers options and more often than not gives you a sense of belonging rather than exclusion that’s been the pain that’s been felt for far too long.