When I was formally diagnosed with ME in January 2007 the printed information sheet my GP gave me said that ‘most people make a recovery within 4 years and those who don’t will probably be ill for the rest of their lives’. It haunted me then and it haunts me now despite this idea being largely discredited since.
Four years seemed an impossible amount of time to contemplate being ill for. The six months I had previously been signed off work sick for felt like an incredible period to be ill for. I had heard the theory of ‘4 years’ while I was off sick but before a diagnosis had been made and just before I married I asked my husband if he really wanted to go ahead in the knowledge that this might, possibly, just persist for a while. What if I *am* ill for four years, I asked. I don’t think either of could comprehend it but it scared me silly.
Having first seen a doctor to report symptoms more than 18 months before my diagnosis once it was confirmed the taunt of ‘4 years or bust’ made me determined I was going to beat this illness. I wasn’t going to let it win, let it rob me of anything more. After all 4 years was a long time in which to get well and I wouldn’t feel this ill for all of that time because I would improve. Linear progression like everything else in life, no? Well actually, no.
Now here I am 4 years past my formal diagnosis having had symptoms for 5-6 years. It’s frightening to say it so plainly.
Pretty much everyone who is informed doesn’t say “most people recover in 4 years” anymore because it’s not been proven to be true. But it still hangs over me because once it was a milestone. That one day I would be able to think back and laugh at the idea of worrying whether it would take 4 years to get me back to health.
In truth I made a small recovery after the big crash of December 2006 (after a disasterous phased return to work), a further small recovery when I started on D-ribose and had medication for pain control and then a further small recovery when I started LDN in December 2009. But I’m still not close to being back to the level I was at before the big crash despite that in itself being pretty poorly. I still long to that level of ill because compared to now it would be such a relief. I could drive, I could do physical things for short periods, I could do stuff – even if it left me exhausted and needing to rest. Now it’s mainly rest without the doing.
It’s no wonder I’ve been feeling kind of down this month. Combined with recovering from Christmas and festive exertions January is again a bust this year. And my great hope of LDN, despite it giving me some improvement, a year on hasn’t given me as much as I had dared to hope it might.
Growler’s job is being made redundant in July and as the organisation winds down it’s stressful place to be let alone with the added pressure of finding a new job that is a) something he wants to do, b) pays well enough to support us both, c) hopefully is within easy commute so we can stay put and I can keep my supportive GP and d) with a bit of luck offers some flexibility for when I need extra care or if my condition were to worsen.
Lump into the equation that the British government is sharpening the knives for the disability payment I recieve along with not being well enough to make much of a meaningful income on my own and it all gets a bit too much. I just seem to be waiting for life to start again and as the lives of family and friends along with the big wide world marches on with me sat on the sofa only able to watch.
I did find reading one of my favourite articles about coping with chronic illness a comfort.
We all have periods when we feel overmatched and not up to the struggle. But as long as we pay attention to the struggle, we will get through the day. We flounder when we set unrealistic standards, or cannot grieve for what has been lost, or cannot start each day afresh. Depression can be tackled despite the physical complications that try to drag us down.
In some moments I think depression is coming back to get me again but I’m pretty sure it’s just sadness, loss, grief, frustration, stress and anxiety about what the future holds.
Revisiting the site my GP used for the information sheet 4 years ago, which has been updated, has helped a little. Now it reflects the vague complexities of what I am wrestling with in terms of prognosis.
What is the outlook (prognosis)?
In most cases, the condition has a fluctuating course. There may be times when symptoms are not too bad, and times when symptoms flare up and become worse (a setback). The long-term outlook is variable:
- Most people with CFS/ME will show some improvement over time, especially with treatment. Some people recover in less than two years, while others remain ill for many years. However, health and functioning rarely return completely to previous levels.
- Some people will continue to have symptoms or have relapses of their symptoms.
In some cases, the condition is severe and/or persists for many years. Those who have been affected for several years seem less likely to recover.
Improvement with treatment? Which they say is managing your sleep, managing rest, relaxation and diet? That improvement plateaued some years back for me. At least the “4 years or bust” has gone from their advice now.
But I feel a failure for still being ill after all this time. I feel powerless because the only change I can effect on my health is acceptance and working to minimise flaring symptoms. That’s not recovery from illness as most see it conventionally. That’s surviving, that’s living as best as one can. That’s sucking it up and dealing with it.
I don’t quite feel hopeless, not wholly hopeless, no. Hope is still one thing I do have. Hope that things will change, that I will get better, that I am not to be lost in this mire of ME for the rest of my life. Yet I believe that ME is something you have for a larger or lesser degree forever. How do I reconcile these opposites? Hope that I don’t really have ME – that it’s psychosomatic or an adrenal problem or a chemical inbalance and that all this grief and loss has been the cost of an oversight?
I don’t really know where I go from here other than to put one front in front of the other and keep going. I don’t have any new plans of attack. The only things left are desperate miracle cures and taking a year out from everything (everything that keeps me balanced and sane and happy) to try and do things differently but without knowing what might work. That or winning the lottery and paying a doctor vast sums to tinker with my engine until I work again.
Most of the time I am coping and content in the small limited world I am able to inhabit thanks to a lot of buffering by my wonderful husband. I do appreciate the small improvements since 2007 and have no wish to go back to that level of disfunction. I’m just sick and tired of ME is all.