“You’re so lucky!” Really?! Am I really?!

Teensy bit of a rant alert…!

If I happen to mention that I work part time, people, more often than not say “wow, you’re so lucky!” When I’m heading out of work early afternoon on a Thursday, wishing everyone a “good weekend”, people say “you’re so lucky” with a tinge of envy.

I must say, I’m incredibly fortunate that my husband and I are in a position where we can afford for me to bring in a part time wage but I’m not sure where luck comes into that. My husband has worked very hard to get a good job and he continues to work hard to bring home a comfortable wage.

I wonder if people forget that I only actually get paid for the work I do, it’s not like my company has said “yeah, we’ll keep paying you full time but you don’t have to come in every day”! I’m not on much above the hourly living wage for, what can be, a pretty full on job – and this is pro rata!

There are many reasons why I am part time, the one that benefits me the most is that I have time to look after my health. I have had serious mental health problems and currently suffer from arthritis and fibromyalgia so I live to constant severe pain and punishing fatigue. Working full time, I had limited time to look after my health, I need to make time for regular exercise/physio session and plenty of time out.

Lots of people can manage their chronic illnesses by taking a few pills – I do have a lot of pills to that but I also have to do regular exercise sessions, this take quite a bit of time out of my day and just like you’d never expect someone to miss a few days of their pills – nor can I miss a few days of my exercise regime.

When working full time, it was really hard to physically fit exercise sessions into my day, let alone feel motivated to do it because work was taking such a toll on my mind and my body. If I did manage to fit in a session, it was usually at the expense of a social engagement or other activity I would have liked to have done.

So, in order to properly look after my health, working part time is our current solution, if I continued full time, chances are, I was heading for a crisis and would have needed me to take time of work sick and when it comes to chronic illness, this may have led to me being off work permanently.

So, if “lucky” is, waking up with fewer spoons than other people, being in constant physical pain, struggling with brain fog and pervasive fatigue (but having to go to work anyway) and having to go to the gym 5 times a week to manage the symptoms of my chronic illness, then yeah, I guess I am, very lucky!

When we stop talking about our pain

The other day, I read something that really struck home:

“You don’t learn to live with pain, you just learn to stop talking about it”

When an injury first occurs or before a chronic illness is diagnosed, we talk about our symptoms, if they’re worrying us, we have no problem saying “I’ve got a splitting headache again” or “My tummy ache’s not going away” or “The cold really affects my joints” but once you’ve got a diagnosis and are managing (with medication or otherwise) as best as you can, there seems little point to keep going on about it…this is something that seems to happen naturally but it’s a tricky thing that isn’t always the best thing.

One of my husband’s friends was having terrible back trouble a while back, as fellow Christians we were praying for him as he made decisions about treatment including the possibility of invasive surgery. After a while, I asked my husband how his friend was, he said he didn’t know – we didn’t know if that was because his back was better (unlikely) or he’d just stopped talking about it.

I have chronic pain in my neck, back and shoulders and have done for many years. This is due to spondylosis in my spine and fibromyalgia affecting all joints and soft tissues. Spondylosis is diagnosed with MRI and is a degenerative bone condition causing pain, including periods of inflammation and osteophyte (bone spur) growth, which press on nerves etc. Fibromyalgia is a condition diagnosed by ruling out all other connective tissue disorders which causes tender/trigger points and generalised pain and fatigue. I also have arthritis in my ankles which causes pain with every step I take.

I used to complain quite a lot, the conditions I have are difficult to manage, especially in someone “so young”, as my orthopaedic surgeon told me! I take regular pain killers, do physio, do regular exercise, get regular sleep and do relaxation techniques.

The other day my husband asked how my pain was, commenting that I’d not said anything about it for a while. I said that it was ‘as usual’ – I hate complaining, and I hate lying so it just is what it is!

I have come to realise I may have a low pain threshold (ie I feel pain sooner than someone else) but I have an incredibly high pain tolerance – I can put up with a lot of pain and still go about my daily life, not that it doesn’t bother me, just that I don’t let it stop me. This, of course, take a lot of energy which contributes to the fatigue I get anyway!

I find it difficult to talk about my pain as most people, when they hear about it, want to help in some way, or at least say something useful, sympathetic or supportive. But there isn’t really anything anyone can say or do to help. If I do mention it, it generally feels quite awkward and I defer to lying, along the lines of “it’s fine, I’m managing ok” or “I have good days and bad days” – which is technically true but my good days are still about 5-6/10 on the pain scale…

Normal for me is pretty bad but who wants to hear that every time I see them?!

If I don’t talk about it, people don’t realise that I’m suffering, assume I’m fine and don’t understand when I need to leave events to go to bed, if I’m distracted or if I don’t offer to help (set up tables, move chairs etc). I worry that people won’t believe me because I ‘look normal’ or they will just think I’m lazy or a flake!

The thing is, I can act normal, as I did the other day in breakaway training at work, but I pay for it afterwards. That evening, I could hardly think, my head felt like it was completely split open, my shoulders and arms were stiff and I coulnd’t move them without excruciating pain. Hot pokers and crushing vices could probably reproduce the pain fairly accurately.

I have read some fabulous books by Paul Brand and Philip Yancy about how we’re meant to listen to our pain, not get angry about it or wish we didn’t have it – it tells us something is wrong, if we didn’t feel it we wouldn’t pull our hand away from the flame or take care of a brewing illness.

Unfortunately when it comes to fibro, the thing that’s wrong is the pain communication system – this means, I feel pain when I shouldn’t. Pain from spondylosis is due to physical degeneration or deformities – I listen to my pain and do not push my body beyond it’s limits too often but it’s incredibly frustrating when my brain is active and wants to be doing, but my body just can’t.

I’m not looking for people to feel sorry for me (that’s fairly pointless!) – I’m just saying it how it is.

So it’s a difficult balance, talking about the pain doesn’t solve anything and makes other people feel helpless or awkward, not talking about it means people don’t know the truth, may think I’m rude or acting strangely.

So, perhaps we should try to remember, if someone has a chronic condition, no matter what it is, diabetes, arthritis, mental illness, bowel or kidney disorders, they are managing it every single day. They may not talk about it but that doesn’t mean they’re fine, it doesn’t mean they’re not suffering just as much as when they do talk about it, all it means is that today, they’re not talking about it.

Sometimes I wish my conditions were more visible but most of the time I’m glad I can choose who I tell. I guess, my health is my business and I maybe I shouldn’t worry about what other people think.

Personal story of fibromyalgia

Every fibromyalgia sufferer will have a different experience so in coming to terms with my new diagnosis I thought I’d share with you how my fibromyalgia affects me.

For a very long time now I’ve had unrefereshing sleep which is incredibly frustrating. I’ve struggled with mental illness and have had bouts of insomnia but this unrefereshing sleep is nothing like that. I can remember going for days on end without sleeping but once I did, it would feel amazing. Now, unfortunately, I sleep, I may on the face of it, even sleep well as I go to sleep fine and I stay asleep. But when I wake, I’m still exhausted and feel as though I’ve not slept at all. I’ve learnt that I have to get an average of 8 hours sleep every night. I still struggle with the fatigue but it’s slightly more bearable. I keep a track of my sleep so if I’m feeling particularly zombified I do a few calculations of my averages and usually, sure enough, I’m down at 7 or 7.5 hours (or worse) and it makes such a difference. Most people find if they get a few good night’s sleep, they’ll catch up, but I genuinely need the additional hours made up.

My most prominent symptom is fatigue and this really gets to me because I’ve always been an active person but feeling lethargic all the time it’s really hard to make the right decisions about how much to do and when. My mental health history tells me following one’s desire to not do anything is rarely particularly helpful. But this is not like mental illness, I’ve previously not been able to trust my thoughts to want the best for me (anorexia tells you not to eat even when faint from lack of nutrition, depression tells you to spend time on your own even when in the depths of loneliness). Now when I want to rest, I’m trying to trust that this is likely to be the right thing to do but I’m still learning what pacing is all about. The problem I’m finding is that rest is not as restorative as it used to be so missing out on something to feel refreshed enough to do the next activity doesn’t really work. So frustrating!

Most people find a holiday, a rest or just a change, refreshing to some degree. Not me. Don’t get me wrong, it’s great to go on holiday but it doesn’t have the profound impact it used to. I have to factor in recovery time more so than most.

Feeling like I’m walking through treacle is a good way to describe the fatigue. I’ve enjoyed running since my early teens so it’s been really tough to contend with this aspect. Recently I’ve tried getting back into running but it’s been such hard work, my brain wants my legs to work but fatigue, pain and stiffness makes it…I don’t want to say impossible but it certainly feels impossible. I’m so so determined to find the right training programme so I can run and enjoy it again. I’ll keep you posted!

I’ve always been someone who’ll throw myself into something and pay the consequences later (i.e. “Just do it” no matter how tired or exhausted I feel afterwards). I’ve heard this is probably not the best way to be with fibro but that’s my personality so maybe it’s going to take me a while to learn how my personality type will interact with my fibro.

I don’t experience the extreme pain a lot of fibro sufferers do. For most, this is the predominant symptom but for me it’s in the background. The form it tends to take for me is that my muscles get quickly fatigued doing something very simple. For example, I’m writing this cramped into a plane seat and my shoulders are aching because of the angle, even though I’ve only been writing for a few minutes. Something as simple as holding my husbands hand in a particular (relatively normal) position for a few minutes can quickly be uncomfortable which soon descends to feeling painful. If I’m in the same position for more than about 10-15 minutes my joints start to ache which turns to pain within a short time. My hips in particular, sitting, standing makes no difference. At times, this presents itself as just not being able to get comfy which is really hard when trying to rest. It’s at these times I say the classic “I hurt all over” that you’ll hear from many fibro sufferers.

There are trigger points on the body that react adversely to light touch. For me, these are my shoulders, neck, back, hips and elbows (to name the worst). These points used to be used for diagnosis but they’re not believed to give an accurate picture anymore since the disorder is made up of so many more symptoms.

Some people talk about fibro-fog, an experience of having cotton wool for brains and just not being able to think straight or concentrate on anything. I occasionally experience this but it’s mostly linked to my tiredness, ie the more fatigued I am, the harder I find it to think straight (similar to the average Joe but the fatigue being constant rather than coming and going!) so I’m not sure I’d count it as a separate symptom for me.

I often hit a wall. I’ll suddenly get overwhelmingly tired such that I simply cannot stay awake. I know lots of people experience this but it happens about once a week for me and not at a predictable time on a Friday night, it can happen anytime and as yet I’ve not worked out how to predict it. I hope, as I get used to tracking my illness, I will manage this better.

I’ve always been a headachy person, this hasn’t changed. Headaches are a common feature of fibromyalgia but I wouldn’t know the difference. I go through periods of getting a lot more migraines and I’m trying to track these to find triggers I can then avoid but I’ve not come to any clear conclusions yet.

Gastro symptoms are also common in fibromyalgia. I have been having serious problems with daily nausea and indigestion which are being investigated (not looking forward to an endoscopy) so we’ll see if these are related to the fibro or a separate condition.

Unfortunately, my experience with diagnosis has been very unhelpful and this is common amongst sufferers. My GP was vague, referred me to a rheumatologist who was vaguer and didn’t offer anymore help than an internet page. Fortunately I’ve had good support from a new GP and she’s referring me to a specialist in London. It’s a shame that such a common disorder (2.9-4.7% of the population) doesn’t receive a more helpful response from doctors.

Something I’m having to battle with is the possible causes/triggers for me developing fibromyalgia. There is much debate around this, so my musings are pure speculation, this in itself is hard as there is no hard and fast conclusion to come to. Firstly, it could be due to how badly I treated my body during my anorexia, this is hard to come to terms with as although I do not believe having anorexia was my fault, I know I made some decisions that perpetuate illness rather than recovery (for example rejecting help when it was offered though fear of losing part of myself). Another possibility is that the stress in my previous job. I ended up covering a manager role (as well as my own position) when they didn’t recruit into it for over 18 months. I found it completly exhausting but because of my character (which was taken advantage of), I could see the work needed doing so I did it, putting everyone else first. I find myself feeling angry about this. Partly at the company, partly at myself for putting up with it for so long – due to my low self esteem/confidence thinking I had to put up with it and because it’s my character not to let people down. It’s recognised that emotional and physical stress are usually contributing factors for someone developing fibromyalgia.

I’d be really interested to hear about other experiences of fibromyalgia in the comments below. I’d love to hear how people are managing it (or not), it’s important we give each other support.