3 Years On, 3 Years of Managing

Today marks 3 years of suffering from anxiety disorders and being unable to work or leave my house much. I’m never quite sure what to write in these posts and this one is particularly difficult to write as I’ve been so up and down over the past year, there have been high points where I’ve been able to go out on my own for up to a couple of hours whilst taking photographs and there have been real low points where I’ve been unable to leave my flat for days on end and have had to cancel visits or leave early because I’m simply not coping. In some ways I feel stronger and a little more able to cope and manage, I’m not sure what’s caused this but I do think it has a lot to do with how long I’ve been experiencing these symptoms for, after a while you do get more used to it and while you’re still suffering every day, you learn to sit with that for longer and put up with it more before it gets to the point of overwhelming you. I also feel though that I’m much more all over the place and less stable, in some ways this is good because it means the good bits are a bit better but it inevitably means that the bad bits are often worse too and more unexpected. I wrote recently that I’d been really struggling since New Year’s Eve and that lasted nearly 3 months, I think I’m finally coming out the other side of that now and tentatively I’ll say that I think I’m feeling a bit stronger and more capable again but my IBS is still kicking in every time I get stressed or have to go out anywhere even though all of these places are very familiar to me so I’m certainly not back to my pre-Christmas level of functioning yet. I think I’m gradually going off the idea of analysing a whole year at once, while it’s important to look back and to see how you’re doing in comparison to various points in time, I also find it unhelpful because a year is a very long time, especially in the world of a sick person and it’s easy to generalise and view the whole year as being worse or the whole year as being better when this wasn’t actually the case. I prefer to be realistic and break it down a bit further and that has helped me see that certain aspects are a bit better and certain aspects are the same or worse and that these often change.

So where am I at now? I’m starting to get a bit stronger and I feel a bit more resilient, though ask me on a bad day and that sure as hell won’t be the case. I often wonder how realistic my view is because on good days I wonder why I’m at home, why I’m not working and whether it’s all imagined and then on bad days I don’t even know how I get out of bed, let alone run a blog, manage any deadlines (though I’m pretty ace at missing most of those I set myself) and actually make any meals at the right time. My view of the world and myself is very changeable and very much affected by how I’m feeling at the time. Generally though, I’m pushing myself really hard and doing my best to keep challenging the anxiety and live as normal a life as I possibly can within its confines. I struggle a lot with people not understanding and I now feel like I have to explain many of my actions or not show everything because so many people think that doing something once means it was easy, fun, or that I can continue to do it. I can’t stress enough how unhelpful or inaccurate this is. When I do things outside my home they’re rarely fun or enjoyable, I have to focus the entire time on keeping my breathing under control, I need a lot of reassurance and my thoughts are always racing, this doesn’t mean I don’t have a good time but it does mean that what you might see isn’t usually representative. I’ve become a master at covering up how I’m feeling and disguising how hard I’m finding things, I’ve spent 3 years trying to manage the panic symptoms so that I rarely have panic attacks whilst out but I’ll often have them when I get home because I’ve forced myself to hold it together for too long and that energy and fear has to come out somehow. It’s exhausting feeling like this and then being misunderstood and assumed to be “better” because I’ve done something once. 3 years of being ill has taught me that doing something once, even 10 times, doesn’t mean it gets easier, it doesn’t mean I can do it every time and it doesn’t mean that it won’t get harder again. Anxiety is very random, it’s very changeable and it usually does what you least expect. Instead of telling me that I’m better or telling me that it’s great I’m going out more, perhaps you could ask how I’m feeling, ask how I’m finding it and what I’m experiencing, rather than assuming, or worse, telling me how I must be feeling. If you look closely enough, you’ll see the signs of anxiety and stress, you’ll see that I’m stiff, my shoulders are up, I’m very jumpy, my eyes are wide and scanning the room, I’ll rub my hands together and rub my legs hard to try and get out some of the nervous energy and I’ll dig my nails into my palms. The signs are there but I’m very good at covering it up by smiling and joking and pretending as hard as I can that it’s not happening and that I’m in control.

Over the 3 years I’ve been ill, I’ve learnt a few coping strategies, these have varying levels of helpfulness and success but I do have more of them to try now than I ever have. Keeping my hands and my mind occupied is really important, colouring and crochet are great for this as long as my hands aren’t shaking too much and I regularly use both to help stay calm. I have grounding stones, 2 bright blue glass pebbles, that fit in the palms of my hands that I grip onto when I’m out if I’m feeling really stressed and they’re nice and flat so I can easily put them in my pockets and no one will notice. I also try not to bite my nails so that I can dig them into my palms if I don’t have the stones. I also like to bake though I usually need a bit of moral support as my confidence isn’t very high but I love being able to make tasty things and it’s a great distraction. My newest coping strategy, as mentioned in a previous post, is photography. This is mostly great for my anxiety and helps keep me calm and focused on the present and means that I stay outside for longer (more on the benefits can be found here). However, it brings its own anxiety with it, for a start, I can’t bear being watched or looked at by strangers and having a massive camera hanging round my neck or bending down to take photos means that people notice me. It’s also difficult because I want to be able to post my photos on social media when I’ve managed to go out, I’m really proud of some of the shots I’m taking, the things I’m noticing and the things I’m doing but as mentioned above, this can elicit responses from people wrongly thinking I’ve improved or that I’m finding it easy. Sadly, this isn’t the case and while I am pushing myself harder than ever and photography is making me that bit more determined, I’m still really struggling to go out and this ranges from being scared of my door being knocked on to occasionally being able to go out alone for a couple of hours, and anything in between. I cannot plan trips out without huge anxiety for days ahead of time, often I can’t follow through with plans and even when I do, I struggle throughout. Having to go through this suffering, dealing with these symptoms every single day for 3 years, and then having it simplified into “yes, but you did it” the few times I do succeed, is very difficult to manage and to tolerate. I don’t want to be negative but I also don’t want people around me to force positivity onto me. I’m so grateful and proud every time I set foot outside my front door, whether that be to take the rubbish downstairs, or to go on a trip out, but I still have to deal with the constant stream of fearful thoughts, the flinching, the feelings of being totally overwhelmed whilst fighting to be outside because I feel like I’m going mad indoors and just have to get outside and see something other than brick walls and my possessions. Trips out aren’t split into good and bad for me, they’re a mixture of both every time, I absolutely make the most out of them and focus on the positive and rarely even talk about the bad bits (except whilst blogging) unless someone tries to force positivity onto me and make out that the whole thing was sunshine and rainbows. When I’m not dismissed you get the full picture, you know that I struggled but that I’m proud beyond words, that I’ve now got photos of every trip out, every little thing I noticed from ice-covered litter and animal bones to birds, flowers, sunsets and even deer! Those are the things I want to be able to share, to be able to show off but that I usually feel unable to do with most people because it feels like I’m not believed when I receive comments about how much better I appear to be doing.

However, in the spirit of pushing myself and trying to combat the anxiety I’ve decided to post some of my favourite photos below because I really am proud of what I’m achieving and how hard I’m trying and I don’t want to have to hide those things because of the fear of misguided comments. I’m really hoping that over time I’ll stop worrying quite so much about what other people think though this is very ingrained in my personality and something I’ve always struggled with. I wish I could just brush off what other people think and say and just do things for me but sadly, that’s not how Social Phobia works, it’s a condition that means that every confrontation, every interaction, every glance or even future event has to be analysed, worried about and obsessed over, I try to just think ‘sod it’ but I just can’t, it matters so much to me to be liked, accepted, and above all else, believed. I really am going out on a limb every time I post photos from outside my flat, it might not seem like a big deal but to me it’s akin to posting half-naked photos of myself, I feel exposed and it means that people can, often accidentally, attack me in the most damaging ways. I’ve always strived to tell the truth, but telling the whole of it is a real struggle for me. I never, ever lie but I often don’t feel able to tell the whole truth because I’m often not given the time or space to fully explain a situation and then assumptions are made that I’m improving or achieving more than I actually am. I probably sound completely mad and totally paranoid but I’ve been receiving these comments throughout my life, from the age of 9 when I first got ill with M.E/CFS and my biggest fear and hate in life is not being believed so for me the stakes are really high every time I open up enough that someone could disbelieve me.

I hope you’ll all enjoy my photos, I’ve loved taking them and am really pleased with them. One thing the anxiety is great for is anxious vision, or as I call it “anxious eyes”, it means that I notice everything around me and I know that’s making me better at photography and noticing subjects to capture. I’ve had my camera for 2 months and have already taken over 5000 photos, a huge chunk of which have been through my lounge and bedroom window of lots of birds that visit the trees outside our flat, I couldn’t be more grateful for them on the days when I can’t get outside and I’m regularly known to take 1-200 photos of a pair of birds in under an hour in the hope of getting a perfect shot. It’s a great distraction and it’s lots of fun. 3 Years On, 3 Years of Managing.