Falling In Love with My Pain
This post is not an invite to a pity party. This post is not about look at what I have been through, feel sorry for me. I don’t feel sorry for myself. Though I have a lot great days and there are seasons when I have shitty days and there are days when I am in a perpetual state of pissed-off-ness. On such days, I’m really grateful that there is no significant other in my life – husband or BF or children or they would hate being in the same space as me. Misery is a b***h and in this case…does not like company…so, in need of a sorry a**e – pirry parry – wrong place…
This post however is about discovery, acceptance and dealing…for over three months now, I have been paying more regular visits than necessary to one of my least favourite places on earth – the hospital. It has been more than a decade since our relationship started – the hospital that is – still I don’t like it but I now know the score. A call from them on a friday afternoon or evening is no good. If they don’t call on friday after a routine check, you are safe for two or three days because they could still call monday or tuesday. One reason I never give my landline out but to a few and when that phone rings, I know it is one of a few calling…and God forbid they call you at midnight, then you are really f***d!
So, when I got that famous call to say we need you to come back for another check, like a good girl, I went in and sat in that famous chair where you are waiting for them to deliver the next bombshell. And in one sentence, my energy disappeared, life flashed before me and I started shaking because I had become comfortable with the every now and again message of “your levels are low, are you taking your medication at the right time? Have you missed any dose lately? We need to make sure we are getting the right figures…”
The message this time was different…
Her: Your levels are abnormally different. Your ‘xyz’ is too high
Me: (At first, I thought, here we go again…they play yo-yo on me every now and again.) So I asked what does this mean?
Her: It could be the first signs of rejection.
Her: So we just want to check and make sure everything is fine.
Me: Changed face, instant dry lips, over-dried throat and my heartbeat quickened. Even the make-up on my face knew something was wrong…my whole countenance changed. Fear set in, and in one minute, every dream I have carried lately said good-bye. Travel dreams, writing dreams, even those I have not verbalised to anyone. And somewhere inside me, I have had and kept this secret that there is still hope for the likes of me – you know, secretly holding out though not making it the focal point of my life – I will get married, I will make beautiful babies, I will raise and see them grow, play with them and much more. I will still be a journalist and keep working on my new project/s. Nothing could touch me. I was untouchable. I was finally getting my life back. I even told the person delivering the message, “I don’t need this right now. I am just beginning to feel like – finally, things are going the way I like.” She showed compassion and so, we went through the list of medication I currently take, asked questions and if I take anything they – the doctors did not prescribe for me, asked about my diet and others…
I knew what was to come. I got clued up on the drill when I was 15 and by 16, I had my diary pretty much planned – more tests and more hospital appointments. This particular day, I had agreed to meet with one of my editors and I went ahead. Stayed strong the whole time and we had our meeting and I was honest with her because I can be honest with her. As always, she was kind to me. I came home after promising her that I would be fine. I am just going to focus on my deadlines – that’s one way I deal with things you see – I just do more work even if it can wait. Other times I could give a frigging a**e concern and just recoil into a space where no one can find me. But I got home and something broke and I bawled like a woman, whose lover left for another woman. I got feverishly pissed-off, bawled some more with the snort flowing as I asked myself questions?
On one hand I was equally angry at myself because a week/two prior, I had had enough. I have been an “addict” on medical grounds since I was 15 and sometimes I get tired of them – they – the medication. For about a week, I refused outright to take any. It just felt so good to be able to wake up without that nauseous feeling or going through the day without being tired and sleeping about like a pregnant woman or the one I hate the most – being in a foul mood and withdrawing from folks – which to date, my mum does not understand how mood swings and depression could possibly be the side effect of my medical challenge and the pills I drown in daily and they in turn, when they take their course of effect create a world that is raging with contradictions inside me. For example, I get so hot after taking my jellies, I feel menopausal. But so it is. One reason I find solitude so comforting. I have come to love my space and when I feel that mood which makes me stroppy and unattractive coming upon me, I withdraw from the world and stay in my space…needless to mention the other side-effects I put up with. Nevertheless and please, get this, I strongly believe that is a small price to pay compared to living on dialysis and the fact that you practically have no control over life as it were…no matter how much you try to make it work. I have been there. I have lived it. I know a thing or two about it.
After bawling and taking a closer look at my levels and when it started going through the roof – asking more questions than I had answers for – I slept off talking to the still walls of my room, which by the way did not give me the desired reaction or response I wanted. The paint on the wall did not and still has not changed colour. Being me, I didn’t tell anyone else, just kept the show going…until I got busted. My mum has these antennas and can sense things you don’t plan on telling her. Then I told my mentor, she put it in perspective and then my closest friend, we have been friends since our boarding school days in Nigeria and has been one of the few constants in my life.
The show is ongoing, I refer to my life as a soap opera with one lead character (me) then you have the doctors and all that comes with the medical world. The needles are the bad guys. I hate them. I think they are f*****g pricks and the rudest pricks to grace my body. I have done a few tests and so far all the results have been very upsetting and really have me in a place I don’t like but my mentor said these words, ‘park it and focus on other things’…so I parked it in one corner. I have to go in for one final test. It is a test that will determine a lot of things. It is a test I am not looking forward to because it will hurt but more so, not knowing what the outcome will be. I didn’t think I would ever have to do or take this particular test because this is the last thing they have to do to determine if really, I am having a rejection episode. I believe they will be sure as to what needs to be done if any or if things have gone back to normal based on the results.
I am holding out for the latter. That would be the best outcome possible. I truly believe I deserve that. You might not but I do. I know when you deal with this kind of ‘ish’ you develop an entitlement complex that you deserve to be healthy. So there, I said it. I deserve to be healthy! And that comes with responsibility – the responsibility to take better care of myself and remember I am not super-woman. There are days and times I carry on like I am one. That responsibility also means it is okay to ask for help – which I am not very good at when it comes to my health. I have become so used to doing everything for myself, I get on with it. Sometimes, rather than talk, I write in my journal. I need to learn to talk more but not with the world, just my trusted circle. One good thing I have learnt of late is when to switch off even if I have a deadline. Deadline can wait but I cannot afford to be dead. I am holding on to the hope and faith that has kept my mind and sanity all these years that they will figure it out. I know there will be changes to a few things – a strict health regime is definitely part of it and my consultant is going to be on me like a hawk for a while…
My anxiety these last few months has been for one reason and one reason only…This was the first time the word rejection was used and that scares me because it is one of my biggest fears – to lose the freedom having a transplant has given me. That word hit me so hard, it slapped the ‘ish’ out of me because I am now at a place where I really want to live and do all I can while I can…I think being in your 30s does that to you.
However hard that news hit me, and this is where I am heading…physical pain has always been a constant for the greater part of my life. We all have emotional and mental pain to deal with from time-to-time, that is not an exclusive club neither is physical pain. We all get that too. In my case, this constant pain just means the quality of life can at times not be at its best because I am either in excruciating pain, feeling damn right uncomfortable because I have taken my jelly babies and feel like I have been set on fire or high on pain-killers…sometimes, I truly feel and believe it is the very medication that is meant to keep me alive that induces the pain or makes it worse…
According to one of the physiotherapists I have worked with to address this pain, thousands of people suffer from un-explainable pain. I am one of them… another statistic…the pain starts in my lower back, and then finds its way to other areas. Then there is the pain I feel in my joints and the pain that just moves around me…I have painkillers on standby, an electronic pain device to help me manage it and I also take pain management class. Basically, they just teach you how to live with this pain because they really cannot help you and nothing will get rid of it. I have learnt to smile even when in pain. I have methods of getting out of bed on days I wake up and simply cannot move because the sucker hurts so bad. I feel like a man who has been kicked in his balls…
When this pain intensified about thee years ago, again, I did every test to find out what the cause could be. How do you deal with something you cannot see but feel on a constant basis – a constant invisible companion and tormentor but certainly not a lover? At least if it was a lover, I would not complain. How dare you complain when you are getting some good loving? But I have learnt to live with it and make the most of times I am not in any pain.
This post has been a little difficult to write but one of the biggest things I have had to learn in the last 15+ years, is how to be free with my story and not ashamed or embarrassed that I have this thing – which right now, I don’t want to give a name. I see it all the time, from mental health challenges to HIV/Aids among others, we are ashamed to say this is my ‘ish’ but I got it under control or I am taking care of it or I am managing it. We cover it up because we either don’t want to be seen as a sorry case or perceived as weak or we don’t want the cultural/traditional stigmas that come with the ‘ish’ being attached to us. We forget that we are not IT! At the same time, you don’t tell your story to garner sympathy, you lose your power when you do that…when you tell your story – let it be an empowerment process and that you are taking ownership of it.
For a few weeks now, I have been complaining to my friend that I am in constant pain, even before I went to South Africa or Nigeria. In SA, I ensured each night before I went to bed that I took my painkillers, used my pain relief device on the nights I needed to…so that during the day, I won’t feel out of it. It was not going to get in the way of what I went there for. This was a trick I picked up when I went to Tanzania last November.
Talking to my friend was part of the ownership process and it led to the realisation that I need to fall in love with this thing because I have never been in love with it – I have simply moaned, complained, took my painkillers and got on with it. Falling in love with it means my WILL to live as normal a life as possible overrides the strength and intensity of the pain to leave me helpless like a chick. This new way of thinking about it and looking at it evolved from talking to my friend. On this particular day, I had had enough. Just about had it and I remember saying rather than always being angry at what this ‘feeling’ is doing to me, how about I change the way I actually feel about it…I am not embracing it because I have become used to it or want to be used to it but I need a strategy. I need to acknowledge it is but it won’t have the last word. I won’t nurture it or feed it but I will take care of it. I am not my pain but I am going to own this pain, we are going to make love and with each orgasm, I win!
Images from Health Nice and Bournemouth University Research Blog