"How are you feeling?" It's a question I get asked a lot at the moment. It's nice, it shows people care and I'm always grateful for that but I need to work on my answers.
I think I have a hard time with this as I'm not really sure how I am myself to be honest. I say things like "oh, I'm getting there", "not so good today I'm afraid", "good days and bad", "feeling more like myself today". The thing is, I could feel any combination or indeed all of those things in one day, hell, in one morning!
I sometimes feel I should try to give a positive answer, after all, no-one likes a grump, right? And honestly, I think sometimes that's how people want me to answer. Other times I feel it's important I'm really open and honest so those around me know what's going on and what support I need. All in all I think I may end up confusing others as much as I do myself!
So here goes, in no particular order, here's the good and bad, the full and truthful answer of how I am feeling, or at least as full a list as I can decipher from my mix of emotions right now:
Over the past few weeks and months I've needed more and more help, support and encouragement from those around me and I'm so incredibly grateful that I have it, in bucket loads! At work I have bosses taking the time to read up about ME, reassuring me that they will help me "get me through this" and asking the best question they could "what do you need?". I've got colleagues getting me lunch to save me the trip to the shops, keeping an eye on me so I don't over do it and generally working round my needs. My amazing friends visit me, they've cooked me dinner, run errands for me and even emptied my dishwasher for me! My online /long-distance friends, snap, message, call me and help me focus on the positive. They recommend podcasts and books and are always there when I need them. Other ME spoonies I've connected with online are amazing. Compared to many, my ME is very mild but no matter who I speak with or how severe their experience is by comparison I ALWAYS feel we are all there together to support each other and folk who have been bedridden for years will still take time to ask me how my day was or encourage me when I am down and NEVER make me feel like I shouldn't complain about missing out on little things when their experience is so much more severe. And last but not least my folks. I am so grateful for them. They keep me (and my house) going! Errands, hugs, diy projects, washings, food, making me laugh you name it they are all over it! So yes, I'm definitely grateful.
A few months ago I could tell my fatigue was starting to flare up again. I was starting to notice it more often and when it did come on, it had a much stronger effect. I was cautiously concerned and started changing my life to allow myself to rest more and make sure I was listening to my body. Unfortunately it continued to get worse and I continued to adapt, cutting out social activities, working from home, taking holidays to break up my week, getting a cleaner and home delivery for my food shop etc etc. I'm doing less and less but yet I can't tell if I'm on top of it yet, whether it will get worse or how long this may last. I know it has the potential to get much much worse and that scares me. I've lost my social life, I've started to lose some elements of my independence and even simple things I enjoyed like paper cutting are now an effort for me. Such a change in just a few months is scary enough, but what else could happen? Yip, I'm scared!
Despite having a lot to be scared about, there are lots of times I feel incredibly strong and even proud of myself. I've recognised this early, I've taken steps to try and manage it as best I can, I've openly admitted I need help, when I'm feeling down I try to pick myself back up and when I find that tough I reach out to others who I know will help. I get up and carry on when I can and identify things I can do which I know will make me feel positive. I share when I'm feeling good to remind myself of the good days on the days when I'm feeling less optimistic and most importantly I haven't given up hope that I'll get through this. So, you can add strong to my answer as well!
There's nothing quite like sitting on your backside telling your retired mother where everything goes as she empties your dishwasher, right after she's brought you "easier to eat food" because you "ate cookies the night before for dinner as cooking something was too much", to remind you that you are not on top of things. Oh and this was right before she put the bins out, changed my bed and took away my washing! I couldn't make it to my work's day out, couldn't make brunch with friends, spent a weekend recovering from a gentle swim and sauna, can't clean my own house, couldn't get to the chemist for my prescription, can't get to the hairdressers, couldn't, couldn't, couldn't, can't, can't, can't. Urgh!!! I know it's okay I can't do these things right now and in the greater scheme of things who cares that my eyebrows seem to be slowly taking over my face or that I can't hoover the stairs but there are days and times when I really want to just crack on with things and knowing that I can't, can really take it's toll on me emotionally. I'm not useless, I KNOW that but sometimes I FEEL useless, so I'm afraid you need to add that to the answer as well.
If you follow any of my updates online or know me in real life you'll hear me say "I'm lucky" a lot. ME affects people to various different degrees. In fact, there's a scale: mild, moderate and severe. To let you understand, since my initial moderate to severe experience with ME around 10 years ago I would have said that mild was actually too strong a term for how I was most of the time. Don't get me wrong I'd still have the odd spell here or there and I did change my job to allow me to establish a bit more of a routine but mostly I was pretty much okay. This year I feel I became officially mild with some elements of moderate. So given what I've shared about my current limitations, the impact on my job, my life and my emotional well-being along with the fact I still think I'm at the good end of the scale, what does that tell you about how severe this can be and the devastating impact it has on so many others? From kids missing so much from their childhood and young adults missing out on education and life in general to those who have been house bound, wheelchair bound and/or bed bound for years or decades, when I say I'm one of the lucky ones, trust me, I mean it.
I'm also lucky that, thanks to organisations and individuals sharing their experience online I have become aware of problems around current medical thinking about ME, about recommendations I received from my GP and how, for others, that treatment has made them much, much worse. It's good to know that of course, however where does it leave me? The only thing my GP can offer is the only thing every ME patient online agrees is terrible and should be stopped. I was given advice 10 years ago to listen to my body and that has been the best piece of advice I've received. But what else can I do? What else should I be doing? I've had a hundred and one suggestions from various folk and of course the internet but either I don't know where to start, don't believe it's relevant or simply don't have the energy to undertake it. I'm asked a lot about what the doctors are saying and told I should go back and demand answers but after 10 years, there's still nothing on offer from them that I believe will help, which, unsurprisingly, leaves me feeling utterly frustrated.
You'll notice 'happy', didn't make the list. I'm still striving for happiness and many, if not most, days I experience it. I'm happy right now but I'm conscious that's not one of the emotions that springs to mind when I'm asked how I am.
This weekend I've had the opportunity to rest a lot, I've slept pretty well, had an enjoyable evening with a friend, got a bonkers get well present, watched a great film this morning, made myself scrambled eggs for brekkie and I'm able to write this blog.
Happiness might be a little more challenging these days but Happy Barnet still exists and she's looking forward to the day she answers the question "how are you feeling" with one simple word, I think you know which one :)
Love as always, Barnet x