Weighing up the benefits

I’ve written previously that, although recovered from anorexia, I continue to struggle with body image and thoughts about my weight etc. I currently have a very difficult decision to make that brings up an important issue frequently faced by people with chronic illness.

Balancing benefits with side effects of medication.

I’ve been on many psychiatric medications in my time, some more beneficial than others. Each time I’ve been up against the decision to try something new, I have point blank refused to take medication with a common side effect of weight gain. A lot of psychiatric medications have a side effect profile that impacts the gut/brain axis, nausea, diarrhea or constipation are very common. Many psychiatric medication increase appetite, which in turn leads to weight gain. Some medications appear to have a near 100% incidence of weight gain as a side effects and I know this would have an incredibly negative impact on my mood and overall mental wellbeing.

I’m currently very mentally well. However, it’s my physical health that’s letting me down! Due to degeneration in my spine I get a lot of pain in my neck, back, across my shoulders and down my arms. This pain, at times, is near unbearable – I say “near unbearable” because, I can bear it, I do bear it, every single day, I get up, get dressed, go to work and most people wouldn’t know I’m in any pain at all.

Painful spine

When I was last seen in the pain clinic (in May) I was advised to try new medication and I was put on the waiting list for anesthetic and steroid injections. I hoped the injections would provide a longer term solution that would mean I wouldn’t have to rely on daily tablets so I decided to hold off making decisions about new mediations. Unfortunately, other than making me feel as though I’d been run over by a sewing machine, the 24 injections I had in my neck and back had no impact! While I await further advice about further intrusive management, I feel I have no option but to review my medication regime.

Medication in hand

The fact that I do bear my pain, doesn’t mean it’s easy – it feels, at times, as though I’m on the edge of coping. What I’d love to do on the majority of days is stay in bed, close my eyes and sleep the pain away; but one of the cruelest things about chronic pain is that it stops you sleeping! Just when your body could do with the time to rest and repair I get a mixture of gnawing/gripping, stabbing (as though I’m actually being stabbed) and electric shocks of pain across my back and down my arms. The best thing I do each day is just get on with my life and keep distracted!

The problem I have with weight gain is difficult to put into words, except to say, it would feel as unbearable as the physical pain I feel in my back and shoulders.

For the neuropathic pain I experience (caused by bone spurs pressing on nerves), a group of drugs called gabapentinoids is recommended.

I’ve read studies quoting between 10-80% people taking gabapentin experience weight gain. This is via a variety of mechanisms: decreased metabolic rate, water retention, increased appetite and decreased motivation to exercise being the major causes. Even in the worst case (a study looking at high dose gabapentin for epilepsy), there’s still a 20% I will not experience weight gain but this may require high levels of self-discipline not to eat more than my metabolism requires and to maintain my exercise regime. But I cannot hold onto this as a guarantee, the maths isn’t on my side!

Maybe I can use this as an opportunity to value my quality of life over what I think about my body? Maybe I can use this as an opportunity to stop valuing myself based on the number on the scale? I know this would be the ideal but it’s not as though I can flick and switch!

Stepping on bathroom scale with tape measure

The struggle is that, the gabapentinoid may not even decrease my pain! I may agonise over this decision, try the medication and it have no or little impact! Worse still, I may experience side effects without any benefit!

People with chronic illness are often faced with decisions such as these. Do the benefits of the treatment outweigh the costs? Common side effects that need to be considered include: drowsiness, headaches, weakness, insomnia, constipation or diarrhea.

Symptoms of chronic illness are usually fairly complex and the question of balancing side effects generally isn’t straight forward. For me, the question is:

“Is my back pain bad enough to risk sides effects that may cause a different type of pain and impact my mental health?” Or can I keep going with the status quo? As much of a struggle as it is, I know where I stand.

Trying to manage symptoms of irritable bowel syndrome can involves multiple medication. One may reduce severe pain and bloating, meaning it’s possible to get out of bed and function but the side effects of urgency (when you need to go you need to go) may be incredibly inconvenient. Of course, one symptom of IBS can be urgency so is it possible to know the drug is causing the symptom?

Painful bowel symptoms

Taking a medication for chronic migraines may mean the sufferer is no longer confined to a quiet darkened room for 1-3 days twice a week but are the side effects of drowsiness and poor concentration 24/7 an appropriate pay off?

Weighing up the benefits against the side effects can be a laborious process that involves a lot of trial and error. The process is often complicated by the side effects being similar to the symptoms of the illness! Just because you experience something new, doesn’t automatically mean the medication is producing the symptom or that the medication isn’t working! There are horror stories of (for example) psychiatric medications causing suicidal ideation but instead of fearing the sensationalistic and inflammatory headlines, what we need to remember is that close monitoring by medication professionals is important when introducing new medications.

Please don’t be put off trying new medications. Of course we need to consider the side effects but even common side effects usual only affect 1 in 10 people.

I’m going to try the new medications and my GP is going to help with close monitoring of the impact, I’ll keep you posted!

New jewellery shop open!

Exciting news!

As a present, my husband sent me on a silver clay jewellery making course a couple of years ago. I fell in love with the craft and have enjoyed it as a hobby ever since. I’ve been making pieces for family and friends and they’ve been well received so a few months ago I decided to open up an online shop; today this has come to fruition! Click here to be taken straight to it!

In its raw state silver clay is composed of silver, wood pulp and water. Each piece of jewellery is handcrafted; during the drying process the water evaporates and during firing, the wood pulp is burnt off. The pieces are then polished to a beautiful shine.

Each piece is individually handmade and therefore unique. So far, on the website, you will see pendants and charms, I’ve paired the pendants with a suitable length and style chain and the charms come with a link.

Ideal Christmas presents!

You’ll see a variety of styles, from natural leaf imprints to geometric shapes, I think they’ll be something for everyone. I’m happy to take commissions so do contact me to discuss this further.

Do come back as I will add more item regularly!

How did colouring save my life?

This year, 4th-10th October is Occupational Therapy week!

If you’ve heard of Occupational Therapy, you may think about physical health aids such as a commode or guide rails, or maybe basketweaving, but they’re so much more!

The Royal College of Occupational Therapists says:

“Occupational therapists provide practical support to help you do the activities that matter to you. They will consider all of your needs – physical, psychological, social and environmental. Their support can make a real difference giving a renewed sense of purpose, opening up new horizons, and changing the way you feel about the future.”

When mentally ill, you may think you’ll see a psychiatrist or psychologist but the nature of mental illness means a multidisciplinary approach is the best and most successful.

The way that you occupy your time can profoundly impact your mental health. I’ve had contact with occupational therapy during prolonged hospital admissions.

One of the most helpful psychological techniques I’ve used is mindfulness but it can be incredibly difficult, when you mind is sick, to try mindfulness for 10 seconds, let alone a couple of minutes. When most unwell I needed something easier to engage with…

When an occupational therapist first introduced me to colouring, I feared it was a little childish and thought I‘d find it hard to concentrate. But I reserved judgment and gave it a go. I’ve been hooked ever since. Colouring was a simple enough activity, I could engage with it and it enabled me to switch off from my spiralling thoughts. It has a calming effect and therefore reduces symptoms of anxiety without much effort! It can also improve motor skills and vision and also boasts to improve sleep!

Ultimately, mindfulness guides you to be able to focus on your breath but mindful activity can be just as beneficial. Mindful colouring meant I focused my mind; continued practice of mindfulness enables us to remain in the here and now rather than dwelling in the past or worrying about the future.

I was seriously unwell so I had to take medication, work hard in psychotherapy and use a lot of other techniques but colouring was the thing I turned to when I couldn’t muster the strength to do anything else. If I’d used every ounce of energy to get out of bed, showered and dressed, I didn’t have any energy left but I didn’t want to just sit in front of the TV; colouring didn’t require me to use any energy, but it helped keep my mind occupied. It played an important part in me beginning to rebuild my life, 1 tiny step at a time.

Plus, I started to feel quite proud of the results, boosting my self esteem along the way!