It’s been about three weeks since I last posted, although it feels much longer. After all those regular updates I needed a short break to process things. Obviously, I’ve also been carrying on with my therapy and I believe I’ve now got a better grasp of how my anxiety and panic arises, and what I can do to make it less debilitating. I still struggle with it and always will – it will never go away. Like everything else, I have to learn to deal with it the best I can. Anxiety in particular has been so intense for me, it sometimes feels like it’s the biggest part of my life, part of everything I do.
With regard to that, somebody close to me recently took time to explain about anxiety and what its physical origins are. To be honest, I haven't looked at it the same since. Don’t get me wrong, it hasn’t gone away, but it has really helped me understand it a bit better. I believe I now know where it comes from and how it works, and I want to explain it to you as she did to me, so that if you struggle with it like I do it could help you too.
Our friendly brain
Essentially, we feel anxiety when signals from our emotional brain overpower the cognitive brain, and seep into our consciousness. As it was explained to me, there’s an almond-shaped cluster of cells located deep inside our brain. It’s called the amygdala and it is part of this ‘emotional’ brain. The amygdala is in a sense our friend, acting as an internal alarm that goes off when danger is imminent. It sets off the fight or flight (or freeze) response. Usually the amygdala is triggered when there is real danger (say you are crossing a road and a car appears from nowhere, or if a fire alarm goes off) but sometimes it goes off for no apparent reason, when we only believe we are in danger. This results in the anxiety response. To combat this you have to train the amygdala to understand you’re the one in charge and are in fact safe.
I appreciate this explanation may seem a little childish, but it has really helped me understand anxiety a bit better and know that when I’m panicking it’s just my little amygdala friend getting a bit confused! There’s a book called ‘Hey Warrior’ I would recommend to anybody struggling with any kind of anxiety. Yes, it’s a book aimed at children, but it has the most amazing way of explaining anxiety, even to adults. It has helped me understand more than anything else, as it’s so well written. As you read it, it makes you feel like the amygdala part of your brain really is your friend.
New prognosis, new therapy
A lot of my anxiety is understandably linked to my state of health, and recently I had a troubling face-to-face appointment with my rheumatology consultant, which didn’t help. Basically, he told me my current medication wasn't working as he hoped it would be by now. Before this, we’d had telephone appointments to discuss what was going on and what the next steps were. Having explained the difficulties I was having he suggested we try an extra medication called Sulfasalazine (another DMARD medication in the same category as Methotrexate and Hydroxychloroquine). Goes without saying I wasn’t too pleased about now having three medications to take instead of two, but I also knew he was advising what was best for me, so I was happy to give it a go. However, after further assessing me and my joints he announced I had hit all the criteria for starting something called biologic therapy (i.e. my inflammatory markers and disease activity score are such that I become eligible for the treatment).
Taking it all in
In all honesty, I didn’t take this news very well. I don’t really do change, and I especially don’t do new medications very well considering I struggle with health anxiety. This was just another worry to add to my long list of them. Honestly, I get so fed up; it really feels like it's never ending. Each time I have an appointment there’s something new to deal with. But I have no choice except to come to terms with it; if I didn’t, I would be in a much worse position than I am now. What do I do? I can't say no, yet I really struggle to say yes. You might be thinking, ‘What's the worst that could happen?’, but for me it is exactly that...what if the worst thing does happen? The worst thing for me is I start taking this new medication and it has a bad effect on me, does more harm than good, or I have an allergic reaction to it. What if it hurts? What if I get the rare side effects from it? As you know, I’m the kind of person that always thinks the worst is going to happen, especially in terms of health. It is DRAINING.
I can't tell you how much I’ve had of constantly feeling like this and always thinking something bad is going to happen. I wish it was as simple as accepting the help and getting on with it but for me it just isn't. I feel like I HAVE to know every single little thing about it before I accept and even then, I’m still reluctant. I’m waiting for somebody to tell me it's going to be absolutely fine and it's going to work, and I’m going to be OK, but the truth is, that is NEVER going to happen because, well, nobody knows, do they? I always look for reassurance when I know the best thing for me is to believe it is going to be fine myself. I hate the uncertainty of being chronically ill – you never know what’s going to happen next, you don’t know if your body will accept or reject this or that medication and you never know why or how. It’s all unknown and you just have to throw yourself in and hope for the best. That doesn’t sit well with me, it’s unnerving and I hate the thought of it.
Some medical material
So, anyway, rant over, let me tell you about the biologic therapy which is proposed for me. It’s called Golimunab. Sounds like something out of Lord of the Rings, doesn’t it? But it’s not a fantasy goblin, it’s a type of drug known as a biological therapy, also known by the brand name Simponi.
Basically, in rheumatoid arthritis and some other inflammatory conditions, too much of a protein called TNF is produced by the immune system. This causes inflammation, pain and damage to your joints. Anti-TNF drugs, such as Golimumab, block TNF and reduce inflammation. Golimumab isn’t a painkiller, but it can reduce the effects of the condition. Symptoms should start to improve after about 8–12 weeks.
Golimumab is given once a month by subcutaneous injection under the skin, usually into your thigh, tummy or upper arm. It comes as an injector pen or a syringe, which you use at home. Sounds just as delightful as the rest of them doesn’t it? Ha! If I don’t laugh, I’ll cry. So that’s a little insight into the new proposed medication for me, although I haven’t started it yet. I’m still thinking about it and making sure I know enough about it. I wish I could see all how the specialists view it, wish I could see it working and what good it can do before I take it, so I know it’s not just another failed attempt at helping me. I wish things were not so uncertain and they could give me some actual proof and say, Jess, this is it now, this is going to work for you, you’ll come out stronger than ever.
Wishful thinking, hey?