Despite my best efforts at rest, my health continued to deteriorate by the day, and the realisation that I was suffering the worst relapse I have had in three years, hit me very hard. Up until now these bigger relapses have come every two years, always towards the end of January/start of February, resulting in several months off work at a time. When it didn’t happen last year, I started to think that, although far from recovered, I was managing to keep it vaguely under control and I was enjoying being pretty much able to do the things I liked, as long as I was careful. Maybe I was becoming a bit too complacent. At the start I was sure that I would bounce back quickly – but I didn’t!

To be honest, I’ve forgotten what it is like to feel well. Even on a good day my body aches, gradually increasing in intensity along with the accompanying brain fog/light headedness and overall feelings of fatigue as the day goes on, but I put up with it and try and get on with my life as best I can. The last few weeks however, have been awful. The aching and joint pain has been considerably worse, my head feels like it’s full of cotton wool and the fatigue has been overwhelming. But worst of all was finding myself unable to do anything but lie in bed or on the sofa. Even doing nothing was exhausting, and I lay awake at night, desperate to sleep but feeling like I had been hit by a bus. I’d had such a good year last year and had been so full of plans for all the walks, days out and trips I wanted to do this year, and suddenly I couldn’t even walk to the end of the road. I was back at square one and I didn’t want to be there. I couldn’t believe that it was happening again. Once more, no medical advice was forthcoming and I felt abandoned, lonely, frustrated and utterly hopeless. A lot of tears were shed.

I’ve always worried that my colleagues think that I am a malingerer. because taking time off because you’re tired sounds so ridiculous, and I was terrified of having to tell my bosses that the relapse was worse than I feared. My attendance record is not great and I am genuinely concerned that there is going to come a point when they suggest that this isn’t the right job for me and that I should think about finding something else. (To be honest it probably isn’t, but I’m scared of change and don’t know what else I could do!) The stress of this did little to help and I found myself spiralling deeper and deeper into a black hole. It was a horrible few weeks.

In the midst of the gloom, there was one bright moment when the world came to me in the form of one of our family themed dinners – something that is fast becoming a regular feature on our calendar. For our first one, we had a lucky dip as to who provided the starter, main, sides, desserts and drink. This saw a rather eclectic mix of dishes, and gave me the opportunity to try my first ever margarita – much to the disbelief of my children! The second one took an alphabet theme, with each of us drawing a different letter and providing food that began with that letter – cue starters of Jalapeno poppers and Vichyssoise, mains of mushroom Gyros and Greek flatbreads, and a Victoria sandwich and biscuits for dessert, accompanied by Ginger beer Margaritas (on a role with these now!) and Limoncello spritzers to drink, to name just a few.

This time round we each drew out a different continent, and once again everyone pulled out all the stops, although my daughter, with Africa, took the prize for the most beautiful looking dish – an amazing bejewelled Moroccan couscous, with preserved lemons, pistachios and cranberries.

There was food aplenty as we had each provided a main course and so had four continents on one plate – a Ghanaian stew with plantain, Tex Mex nachos, Pad Thai and a Spanish paella. All of it vegan, which is no mean feat!

For dessert we had Smores and a South African malva pudding, and although I was supposed to be providing Asian cuisine, I contentiously made Lamingtons because nobody had drawn Oceania and I felt that it should have a small representation.

I was accused of rule breaking (we are a very competitive household), but I stand by it. I have always wanted to have a go at making lamingtons but been a bit put off by the fiddly-ness and potential mess factor. This presented me with the ideal opportunity. They were delicious, and although a bit fiddly and a bit messy, I would definitely make them again. Maybe for our Eurovision party, which is likely to be our next themed event!

And as well as providing me with a bit of light relief, another good thing about the evening was that there was so much food that I was eating leftovers for quite a few days and so didn’t have to worry about finding the energy to do any cooking!

As I have already mentioned, I got no advice or help from my doctor’s surgery – only a willingness to provide me with a succession of fit notes – so once again I was left to desperately google for information. This time round, I actually stumbled across a website that contained something helpful! (http://www.annamarsh.co.uk/blog/). There’s a lot to take in and look into, but I was particularly interested in the post about activity during fatigue recovery, as losing the ability to walk is obviously the thing that I find hardest to deal with. Rather than the boom or bust approach which is how I tend to operate, Anna Marsh promotes doing as much movement as you can without making yourself worse, with the aim of being consistent and repeating this daily before slowly increasing endurance. If the distance you walk one day means you can’t do the same the following day, then that is too far and you need to reduce the walking time. As soon as I was able to get out of the house, I was off on the shortest of walks and I have been trying really hard to stick to this routine. I often don’t want to go, but I have gradually managed to build up to walking for about 30 minutes without needing to sit down for a rest, although my pace is very slow and I don’t cover nearly as much distance as I would normally manage. I still feel very frail and wobbly and have to concentrate hard on putting one foot in front of the other. I also have to focus on the path in front of me because if I turn my head to the side too quickly I feel quite dizzy. This makes crossing roads a little hazardous, but hopefully it will begin to improve. To be honest, I always feel worse when I get home, and it does pretty much wipe me out for the day, but it’s not so bad that I can’t repeat it the following day, so hopefully that’s ok!

I have dug out my Fatigue Recovery notebook, begun in 2020, in which I have painstakingly recorded every walk taken, along with the number of steps, during my last two relapses and I am once again noting down the details. Not only is it a useful reference to see which walks are within my limits and which ones I can start to aim for next, but it also lets me see how I am doing now compared to these previous relapses. The good news is that I am doing better than I was in 2020 and 2022, but the real challenge now is to ensure that I continue to progress slowly and within my capabilities so that I don’t overdo it and make myself worse.

Having built up a bit of stamina, over half term while my daughter was at home, I was able to take these short walks a little further afield which was very exciting. There was a feature in the February issue of The Simple Things magazine (which I always, read via the Libby library app) with recipes for warming comfort food to enjoy after a bracing seaside walk, and I thought that, despite my limited mobility, this would be a fun thing that I was still able to do. With the meal prepared beforehand (and the granola bar recommended for the walk’s snack made a week earlier, removed from the freezer) we caught the bus to Whitstable, alighted at the Horsebridge and headed along the seafront towards Tankerton. I managed a slow half hour plod (my daughter is a very fast walker and I think she was quite shocked by my tortoise like pace, although she gamely adjusted to it) which didn’t take us very far, before needing to stop – but I was out and I was walking by the sea, which even a fortnight before I would not have thought was possible. The sun was shining but there was a very chilly wind, and we settled down behind a breakwater with a flask of chai latte and one of the aforementioned homemade granola bar.

I needed half an hour recovery before I could shuffle the half hour back to the bus stop, and that was me done for the day but it felt like a huge step forward (And back home we tucked into a bowl of mushroom ragout and cheesy mash for our lunch, with a jam crumble tart and custard for dessert. All delicious, and it may now become a February half term tradition – although in future we will hopefully be able to stride out with a proper long coastal walk!)

By the end of the week, I decided to risk another short outing, this time heading to Margate. We began with breakfast at Wetherspoons on the sea front and then continued round towards the Turner Contemporary where, as the tide was out, we were able to see the Anthony Gormley statue paddling in the sea.

On our return, we cut a corner by walking along the main sands before resting for a while in the seafront shelter where TS Eliot wrote part of the Wasteland.

On Margate Sands.
I can connect
Nothing with nothing.
The broken fingernails of dirty hands.
My people humble people who expect
Nothing.

TS Eliot was convalescing in Margate on the recommendation of his doctor, whilst on sick leave from his job at Lloyds Bank. He had had a nervous breakdown and was described as ‘tired and depressed’. Him and me both! I don’t know whether Eliot felt better for his time in this seaside town, but I certainly did while I was there – although despite the seemingly short distance we covered, I clocked up more steps than anticipated, could barely walk home from the train station (only achieved by hanging onto my daughter’s arm so I didn’t fall over), and felt so awful afterwards that I couldn’t do anything the next day. I have learnt my lesson from that one and will be much more careful from now on to stay within range.

After this half term excitement, I am now sticking to the routine of the same local walk, and have started downloading podcasts and dramas from BBC Sounds to listen to in order to relieve the monotony. Although I started the month feeling very low, I am trying to be more positive. My emotions are still seesawing from highs (I’ve managed a couple of short trips out, I can walk further at this stage of recovery than I have in the past, I have recovered before so I can do it again) to lows (it’s rubbish only being able to walk such tiny distances at such a slow pace, this is my fourth relapse so is it going to keep happening every few years just as I start thinking I’m getting better, how much longer am I going to have to be off work, am I going to get sacked?). And when I am feeling low this is often followed by guilt that I’m feeling sorry for myself when there are plenty of people with CFS who are bed bound and there are plenty of people who have far worse illnesses. I know that I have a lot to be grateful for, but sometimes it’s so bloomin’ hard!