Time for another update!
I find myself part-way along a brand new journey. For a while now I have been trying to network and catch gigs which are not so much paid, but are gigs that I’m using as music therapy to get myself back out into the land of the living … Where the focus is my health and energy levels rather than attempting to make a self-employed living at this stage.
It started off slowly and of course as offers didn’t happen too quickly at first I lost a little faith and found myself at a small point of despair for a while. Since then though, I have received loads of trickling offers of little performances here and there, and the simple fact that I have managed to do each little gig so far has kept me motivated and enthusiastic to get out doing more. The wheels are finally turning.
I’ve got one 90 minute gig under my belt, despite not having the energy, and that in itself was a really big achievement. I know I can’t do that very often… It made me poorly and that’s fine now and again… But to do one of that size really pushes the energy boat out and is as rewarding as running a marathon to someone in my situation.
I’m finding that doing 45 minutes is about the optimal for me at the moment. When I finish I feel exhausted, and have to recover for a day or two, but it feels manageable. The result of a two 45 minute set meant a recovery of nearly 5 days. That’s not very conducive to getting better, really.
The scenario I find myself in is a strange one. Since September I have been self-injecting an immunosuppressant called Humira. The results of that have been levelling out, so that now my tummy is working better than it has for a year, and although not perfect, is at least in a position for me to cope alongside it running at about 80% well compared to 20% 2 years ago. The Humira has definitely made a difference there. The side-effects though, are that Humira tends to tire me out. When I inject it, I feel like a tranquilised rhinoceros. I last about an hour or two at best before being fast asleep. I sleep through all alarms and awake with a sore leg but feeling refreshed a good 12 hours later. I take it every 10 days and still feel a little dip on day 9 so may be taking it even more often once reviewed… but this does make sense… My immune system, the thing attacking my tummy, is a very strong one. Before being ill with Crohn’s I was actually very well *all* the time. Days off work were only ever toothache related before all this. The everyday tiredness is one of a few side-effects of the Humira in that since September I have felt a level of fatigue that is double what I was experiencing before taking it. Joint pain and back pain fluctuate so that some days I need to take Tramadol and others I don’t, but fatigue is the last symptom in the chain of Crohn’s… and it is a real shame that the drug I take has this effect as well, doubling up the fatigue level. I could be taking this for a very long time… and so as of right now, I really do not know when I will start to feel an improvement in my fatigue levels. Some good news, is that I’ve been found to be low in Vitamin D and Folic Acid… (my tummy just doesn’t pull the stuff from food like yours does) and thanks to our wonderful GP service I am not able to get these extra supplements until April 7th, which is a big deal, as a lack of these things has a direct result of “Knackereditis” as well. I’m hoping with these supplements that I should start to feel a new level of energy… and it is at that point when I will know I have a better chance to start thinking about making a living again. As things stand though the best description currently is this. I feel like a car battery. I plan to do a thing, wind myself up to start the engine, get there, do what I need to, but my battery runs out after the first few turns of the key. My engine slowly dies, exactly like a car engine that starts fine, and then tails off into an unhealthy cough before an almighty silence… Then I have to recharge my battery with carbs and sleep for a day or two, sometimes more before I can dream of turning the key again. That’s me in a nutshell at the moment.
The good news is I am in the half of the Venn Diagram that allows my stomach to function a little more normally, even though some things still cross over from time to time. It is the better of two evils… to have a slightly better tummy but to be more tired all of the time. Even better news though, is at least I am back in the game, and that is what it’s all about after all, regardless of which symptom is holding me back today.
The amount of opportunities that have arisen since my Facebook plea a while ago have truly been overwhelming now that some time has passed and more people are aware that I’m trying to get back out there. Even though most things are on a voluntary level, the reason I am taking them on if I can is to maintain this momentum of having things to work towards, look forward to, and to have gigging as a form of stamina building and musical therapy for me. You have to understand, that we’re not just talking about gigging here either. I’m talking about even getting out of my house to get to the shops. I have to use a trolley to lean on just to do my big shop and a guy of my build should be throwing trolleys around the aisles not resting on them.
Energy should never be taken for granted… I can tell you!
My yardstick is the walk into town from my house. On a better day I can do the walk slowly and get there without stopping, but I need to rest when I get there before doing what was planned. On bad days I get to around Westgate bridge and simply have to stop as my tummy feels like someone is stabbing me and my bum is so sore that I have to call a taxi to take me home rather than do what was planned. This changes by the day.
Despite all that I’m gigging again and loving every minute of it, because every gig is like soul food for my batteries! It’s hard, granted, but I honestly believe I will never complain about hard work ever again, thanks to being forced to have so much time off, and so to be able to sit here and write a blog about how amazing it is to be gigging again really is a huge deal to me.
The excitement of waking up and not knowing what emails are sat awaiting you is extraordinary. What opportunities sit in the inbox today I now wonder daily… Is it a gig? Is it a mentor meeting with a brew with an ace hard-working musician? Is it an offer of radio play from the album? Do I have a Paypal notification that means I have to set an alarm tomorrow to go and post out my spanking new album to someone lovely?
It’s utterly uplifting and is getting me through this limbo period more than I could have ever dreamed.
And so to the next announcement, which is a happy accident relating to all things networking and volunteering, that has really inspired me, thanks to that simple old tactic… of saying yes to everything. I am delighted to announce that I am now the new official CD Editor at Leeds Music Scene.net! :D
Many who know me have recently seen a journey of sorts into the land of writing in one form or another, whether it is as a blog, a diary, a CD review or another long-winded soppy Facebook message that thanks a million people again for the third time. My fingers seem to be happy at a keyboard, and my mind adores running away with internal monologue, and so for me I think this is a perfect fit. In terms of my health it is actually a great distraction from the symptoms to be able to focus on writing for a while even though I feel uncomfortable. I am incredibly delighted to have such an opportunity, within a group of lovely and hard-working volunteers which means that I will have the chance to hear SO much local new music, and have the chance to objectify what I hear in such a way as to give the review reader an accurate feel for what to expect from a record. Putting it simply… This is bloody exciting!! It’s something I can take at my own pace with no finances or pressures to worry about, and is also something I try to do really well… Helping people, free of charge. :D
I guess the important thing is that at least now I am able to say yes to things, and even though I cannot hope to do everything I am saying yes to, at least I am getting out and about and creating a little momentum, which in turn is keeping my health in check to a fashion. It’s a case of hoping people understand that even though I’m attempting to get out more and do more things, that it doesn’t automatically mean I’m well as such… it just means I’m refusing to let this beat me, and attempting things anyway. It does get a bit weird when people ask me how I am, that I simply can’t say yes I’m OK… But I am now able to say… I’m getting there. For someone who has been struggling for over 2 years now with this stuff… That is a ginormous leap forward, and is liable to make me write blogs like this, that highlight my gratitude for the good things in my life.
I hope I am going on about it less and less, and also hope that people don’t get too sick and tired of hearing about stuff when I do feel the need to be honest… It’s quite tricky when half “How are you doing?” questions are intended to be short questions and you know it’s not going to be a short answer… So I am also grateful for people’s patience. It is very easy to forget that not everyone lives on my wall, and not everyone sees how I struggle when I do get home and my body shuts down… leaving a scenario that feels like I’m not sure how much of yesterday’s episode of neighbours I’m in need of re-running before today’s episode. Silly… but that about nails it.
So thank you. Thank you for being understanding, and for wanting me to take part in everything and for offering again and again knowing I likely have to say no… I’m saying yes more often now… so your patience has been worth it. Please do keep asking! ;)
It seems that my patience has been rewarded too. My second announcement is an absolute belter. I have been asked to support the wonderful Antonio Lulic and the fabulous Nizlopi at Unity Works in Wakefield on May 7th, voting day. You likely know who Nizlopi are… if you don’t they are a wonderful duo who have some serious kudos and an amazing underground following after they released a highly successful song into the charts a few years ago called The JCB song.
Most will be aware that I am very good friends with Antonio as it is and so having us three particular acts on the same bill really is a dream come true for me. I feel giddy beyond belief in all honesty, not only because I’m a little star-struck… which of course goes without saying… but I am just so overwhelmed that such a lovely set of guys have given me an opportunity like this. I feel completely humbled and am looking forward to putting on a professional show and getting my harmonica out to play alongside Antonio just like the old days. Gigging with friends is one of the most amazing feelings ever. I can’t wait! *If* you don’t know who Antonio Lulic is… then feel free to watch one of my finest chums being amazing on this handy video which was on the telly!
And there we have it. A little update with some positives to look forward to, and a big dollop of thank you very much. :D
Happy Easter folks! xx