This month is mental health awareness month and it was also Anaphylaxis Awareness Week (6th to the 12th of May) as the Anaphylaxis Campaign celebrates 25 years this year since it was founded.
It’s also Asthma and Allergy Awareness in America
I have loads to share on the psychological effect of living with a life threatening allergy and the fear of anaphylaxis so I wanted to talk today about what it’s like living with this condition.
Add to that chronic eczema, something that I and many other people with allergies also have and you have a whole raft of conflicting and limiting life affecting conditions. Before you’ve even woken up to face the daily challenges of juggling keeping a home and work life balance, these other conditions add a heavy burden.
The psychological effect of all of the above is pretty much overlooked in the general care and support of these conditions.
We get a diagnosis and then we go away and work out how on earth to live with the daily worry, stress, fear and anxiety that brings.
There really isn’t much support and I’ve found out the hard way that to get help you have to be in a pretty desperate place to be eligible. That shouldn’t be the case. It should not be a surprise that so many of us struggle to cope and often feel alone, confused and lost.
But we soldier on. We put on a brave face. We get on with life. We smile. The person you see at events, work, social gatherings etc. is hiding hours of preparation, stress, anxiety and in my case, regular practise to help me be calm, realistic and level headed on a daily basis. I’ve grown to love my daily mindfulness, meditation and self care but it’s taken me over six months to feel like even a beginner. This was something that I researched and developed myself with my counsellor as part of my self care routine, but was sadly never something recommended by the medical profession at any point before this. It has helped me so much with anxiety which in turn is helping me reduce the itch, scratch cycle, which is far worse when I’m anxious, worrying and stressed.
The benefits mindfulness practise has given me has been incredible and covers all aspects of my life, but it’s not a quick fix. It’s something we need to work at, to learn, to explore and to develop. And my self care practise will not look like yours.
Mine involves meditation, walking and running, self care for my skin, reading and a newfound love and addiction to learning from podcasts. I can’t get enough of them. It all began with Fearn Cotton’s Happy Place and there are so many other podcasts out there.
Anything to expand my understanding of others and how they overcame incredible adversity in their lives is inspiring and really helpful.
It’s so easy to become self absorbed and hung up on what we are dealing with but everyone has their ‘thing’, their burdens and their life challenges. We all deal with these in different ways but we can all learn and grow from shared experiences and taking more time to care for ourselves as well as others.
I have met so many inspirational people through this allergy and eczema community. Often the face they portray on social media, instagram and to the world is positive and happy but as we’ve all grown together and got to know each other you realist that there is always more to every picture. Everyone has battles and more and more people struggle with mental health through trying to bottle these up, not seek help, not talking to others. Thankfully this is all changing and it is no longer shameful to admit you are struggling and to ask for help.
Let’s all make an effort to just listen. To just be there for those around us. No judgement. No advice, unless sought for, just give your time, undivided.
Try not to say things like, Oh yes, that’s when I…. or You should… What you think is right may not be helpful. All the person really wants at the point when they reach our for help or for your time is just for you to listen, ask if you can help, ask how it makes them feel or just give them hug and assure them it will be alright. Put away your phones and get off instagram and actually meet and talk to those you value and care for. Time is so precious so use it wisely.
I will be sharing more about I learnt from having CBT therapy last year for fear and anxiety in future blog posts but one of the key messages I came away with was that I have to learn to love myself and care for myself as I would others. I learnt that I had enormous sometimes crippling compassion for others but almost zero for myself. I was being a complete bitch to myself. That has all changed now. I’m still a work in progress but I am now slowly learning to love my weirdness, my own special brand of beauty and my compassion. Whilst I will always continue to do all I can to help others, through my blog here, through posting positive and helpful messages on social media, lobbying parliament and relentlessly raising awareness about all of the above, I may also go off grid from time because Ruth needs my time too.
She’s actually becoming quite needy actually. Wants another early night with a good book and who I am I to argue?
What is the most important thing that you’ve learnt in your life that combats mental health issues?
Hi, I have this horrible thing called angio edema, I did not see this on the list above. When an attack happens, it just comes out of the blue, uusally in the mornings, or after something stressful, my GP says it is not anything I am allergic to , more angiopathic (coming from within my body). First thing that happens is my eyes itch, and my mouth, then I have trouble breathing, my throat and face swells up. My eyes swell up, it is very scarey, I have to take immediately 6 prednisolone tablets and some Chlorophenamine (Piruton), I have been in hsoptal 2 times, it can be very scarey. I have been given 2 epi-pens in case of a really bad attack. Does anybody else suffer from this, I also suffer from asthma, excema, psoriasis, and mental health (anxiety and depression).
Gosh Barbara, I have heard of this before. We all want to know why something is happening but you don’t have that luxury. If it’s completely random that must be really scary. How often does it happen? This must be really hard for you. I guess you just have to be prepared with all your medical kit with you at all times. Does it happen when you are more anxious and stressed? or just any time? I really feel for you. Keep smiling and look after yourself.
Hi, yes it happens when more stressed, can be once a month, once every 3 months or once a week, it is totally ‘random’ (favourite teenager word). It started happening more recently when I got forced to move because of the bedroom tax, 2 times. I also suffer from anxiety and depression and have bad thoughts, if you know what I mean. So nice to get a reply. Thanks for your message. Not many people know about this thing angio edema, and Capita (the people to DWP employ to do these face to face ‘assessments’ certainly had no idea, and they are supposed to be ‘health professionals’. They say I am ‘fit for work’!
and again, thank you Ruth. for your comment. Another thing is, I have been waiting since November for a referral to an allergy clinic in Brighton, ridiculous eh?
and can you tell me the type of allergy you yourself suffer from, I dont want to make this all about me
I would like to know about other sufferers, and what support there is
and what kind of things help?
I am 58 years old soon, and suffered fromallergies of one kind or another all my life, eg hayfever, allergy to cats, house dust, rosacea too, excema, in a way I think they are all related, something to do with the immune systems and stress
I am looking forward to any more comments
Hi Barbara, well like you have all the hayfever, eczema, house dust mites, mould, cats and dog hair allergy and nickel and latex too. But my food allergies, the real scary ones are do all nuts and all dairy. I have a diagnosed allergy to wheat but this isn’t life threatening. I am also allergic to soya but I forget about this one, gives me really bad asthma. Good luck with the allergy referral. It can take months and months as they are so busy. I suggest you keep a food, mood and symptoms diary. Also make notes of when you have reactions and what you think caused it. you’d need to know what brands of food you ate, keep packets and ingredients. Also take photos of any reactions. Good luck!