Have you ever felt so tired that you went to bed knowing that when you woke up you would feel worse than you did the night before? Do you ever get up & have to sit straight back down because that one movement saps your energy levels so much? Do your bones sometimes feel like they are made of lead & it aches to move even one muscle. Do you ever shut your eyes & the room spins just because you are that tired?
For myself & other cancer patients on watch & wait, exhaustion can be a daily reality. Many patients on watch & wait experience high levels of stress, & depression, both of which are associated with trying to get a handle on our condition. Once you start to take into account the physical impact of the multiplication of cancer cells in our bodies depleting healthy cells, it’s not hard to understand why some of us, who are not yet having treatment, feel like we fight a daily battle to live our lives, unable to just “do” what we used to be able to do.
My own battle with fatigue started at the age of 19 when I had glandular fever quite badly, & then at 22 I developed post-viral fatigue after flu. I realised something wasn’t right when literally all I did was get up, go to work, come home & go to sleep & this was a pattern that continued on & off throughout my 20s & 30s when I had intervals where I functioned perfectly normally, & others when all I wanted to do was sleep. By the time I was 36 & had a young baby, I just assumed that all full-time working parents felt as I did & that I just had to “get on” with it. I’ve talked before about feeling vindicated when I was diagnosed because in some respects it accounted for how I had been feeling for many years & that I could finally put a name to my symptoms.
Being tired all the time sent me back & forth to the Doctors for years, was incredibly frustrating for both others & myself & has played a fairly significant part in my feeling isolated & almost “tied” to the house for a very long time. It’s not that I don’t want to go out in the evenings, it’s just that I never know how I’m going to feel & I really do pay for a late night for days afterwards so generally I refuse invitations, or always drive so that I can go home when I want to. I also tend not to plan theatre or cinema trips where the main event starts after 7pm because there is nothing worse than sitting in a cinema/theatre & willing the play or film to finish because I just want to get home & go to bed. Not sure which one came first – tiredness, or depression, depression or tiredness but they both exacerbate each other ….
I’m really lucky in work in that I have very sympathetic managers who make allowances for my condition & for the fact that I have days occasionally where I am so exhausted that I cannot get out of bed & on those days I just have to listen to my body & sleep. When I have time off I have many “dates” with the sofa & I’m certainly not as active as I used to be. I generally go up to bed at the same time as my 11 year old son & my lights are always off before his but if I didn’t do that I wouldn’t be able to function on a day to day basis let alone work.
In recent years, the PITS campaign was targeted specifically at university students so that they became more aware of symptoms that they could attribute to “wear & tear.” Persistent Lumps, Itching, Tiredness & Sweating are all easily explained away through the average student lifestyle - lack of healthy eating, not getting enough sleep, glandular fever (very common in students – that’s how I got it after all!), allergies to “cheaper” products (what student doesn’t try & save money on the necessities?) & don’t get me started on the sweating! It’s worth remembering that lymphoma is not that easy to diagnose & I have blogged previously about not connecting the symptoms I had experienced prior to my own diagnosis. If caught early enough, many lymphomas are curable but most patients are diagnosed at an advanced stage like me & unfortunately we have to “live” as best we can with our condition - so it’s definitely worth knowing about the early warning signs! Sometimes, everyone needs to take a PITStop …