Tag Archives: chronic illness

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!

We don’t know what someone else is going through

Someone recently said to me that they thought they managed tiredness better than I did. I thought this was an interesting observation and here’s why:

When they’ve had a bad night, not slept well, they feel pretty tired, exhausted even – they manage to get up, go to work and they’re only moderately grumpy. I’m not denying, they manage their tiredness pretty well.

Woman sitting up in bed with her head in her hands looking exhausted

However, they experience my tiredness making me very grumpy, fuzzy headed, lethargic, at times not able to string a sentence together and struggling to do simple daily tasks. What they don’t realise, what no one can understand, is that when my tiredness has got to this stage, I’ve come to the end of my spoons, I’ve borrowed spoons from tomorrow and probably the next day. I’m not just exhausted, I’m completely drained and I’m at a negative level of energy reserves!

Their experience of tiredness is my experience of normal. Even if I manage to sleep I still do not feel refreshed. Chronic fatigue means just that, I permanent state of exhaustion – everyday, I have to wade through thick fog but I function like anyone else. I go to work, I socialise and I go about my daily life and manage to hide how little energy I have. This is my normal, I’m completely exhausted every single day of my life but most people think I’m “fine”.

What this person experienced as me “not coping as well as” them was me experiencing an extremely debilitating symptoms of chronic illness.

Computer generated image of nerve cells communicating pain

I’m always intrigued by the question asked by physicians when managing pain. “Can you rate it out of 10? 10 being the worst pain imaginable and 0 being no pain at all.”. Some say child-birth is the worst pain and woman can experience, while others say renal colic is worse. Others would say nerve pain such as trigeminal neuralgia or 2nd degree burns are worse. I think most people would agree that many factors influence our experience of pain, such as how long we have to endure it and the outcome.

I have not experienced the pain the causes people to writhe in pain (such as renal colic) but I have experienced fracturing my spine so severely I couldn’t move and simply breathing was painful. Surely, the only conclusion we can draw is that one person’s experience cannot be compared to another?! (The physicians question is, of course, just a guide, and it is useful when assessing whether pain management is working.)

My point is simple – we may think we know what someone is going through, from their behaviour, we may think we know how they feel but we can never truly know. Don’t judge how someone else is coping against what you think they’re going through.

Illness and wellness are not binary

Illness – a disease or period of sickness affecting the body or mind.

Wellness -a state of being in good health, especially as an actively pursued goal.

I was ill with anorexia and depression for many years. I spent a long time in recovery, making steps towards wellness, it was a tough journey but I got to the point where I felt I could say I was recovered a couple of years go.

A stable mood, a stable weight, a life focused on the future rather than having to focus on managing my mental health and many other markers of freedom have been reached.

But I still have to do a lot to manage my mental health. To maintain my mood I need to manage my weekly and daily routine so that I manage my energy levels, get enough rest and carefully consider how much stress is acceptable and what activities I can manage. I practice mindfulness as it helps me stay in the here and now rather than panicking about the future or dwelling in the past.

To stop myself spiralling into anorexia, I have to eat regularly but avoid rituals or strict habits. Over eating and under eating are ok but I must always be on the watch for the “anorexic voice” – it’s easily triggered by today’s diet culture chatter and irresponsible social media postings.

I am no longer “ill” and I “actively pursue” wellness.

I have heard some people say they are chronically ill because they will be on medication for the rest of their lives. I have tried coming off my medication, tapered gradually, but my symptoms returned. I have had to come to terms with the fact that I will probably be on medication for the rest of my life – but I don’t consider that to be the definition of illness.

Someone who has high blood pressure usually manages their blood pressure with lifestyle and medication in order to keep their blood pressure within normal limits. Someone who has diabetes uses lifestyle, medication and/or insulin to keep their blood sugars within normal ranges. Equally, I use lifestyle and medication to manage my mental health.

Even though I continue to need to manage my mental health I don’t think considering myself as an ill person is helpful. For some people, holding onto an identity as an ill person can have a negative impact on self esteem and ability to develop and grow as a person. But if I consider myself well and/or recovered, there’s the risk I might take my eye off the ball and not give my health the attention it needs.

So if I am neither ill nor well, what am I?!

Maybe I don’t need a label for what I am!

Sometimes I am more well than others – I have to work hard to stay well, that does not mean I am ill. I do not have to let this define me. I’m learning, despite what some people will have you think, not fitting into a category isn’t a bad thing!