Its ok to cry

I hate crying. In fact Im not sure anyone would say they like to cry. It is an emotion relating to sadness and distress so one we never want to experience if possible (There is the odd occasion that laughter renders us crying in which case it’s not so bad).

I am not much of a crier and it takes a lot to make me cry. Giving up my job really left me pretty low but I didnt ever cry about it. I was upset and close to tears but never actually cried. I am the same in clinic appointments I get upset but never shed a tear.

The few last weeks I have found really tough. I have cried a lot which is when I realised just how tough I was finding dealing with my health just now. The first time I cried was with my physio when she said that the feeling probably wouldn’t come back in my leg but the work we did would help my knee to compensate and it would learn to feel what my foot is not. Things like walking will be easier as my knee learns to recognise the impact when walking etc. I just couldn’t help but cry.

My leg has been the cause for me crying more in the recent weeks than anything else has. I was speaking to my mum briefly about stuff and she has been helping me apply for ESA too. I almost ended up in tears and after she left I ended up in a lot of tears. For years I have dealt with my asthma and it has upset me but not left me in the turmoil that my leg has. I know more about asthma that most of the professionals do, what I don’t know about asthma is probably not worth knowing, but my leg I have no clue what is going on and no one can give me an answer about what is wrong with it or how long it will go on for. All anyone has said is that the feeling most likely will not come back as there has been no improvement in sensation so far.

I am trying to stay positive about it and also trying to learn to adapt and be as independent as possible. I don’t want to sit and wait for this one day to suddenly get better which would be great but if it doesn’t get better then at least I am able to be ok for myself and make the most out of my physio sessions.

What I wish I could do is to let my emotions out more. I felt a sense of relief after crying and letting it all out. I always thought this blog was my way of coping and making sense of everything that goes on with my health. I have some posts which I write that are kept secret which I want to be just for me so I can get it out but not for the public. The posts are not really constructive and more a jumble of my thoughts- or a more jumbled version of my thoughts.

Particularly in the UK we like to have that stiff upper lip and not show our emotions but this is not good for us. We need to show emotion otherwise we eat ourself up inside. It is not weakness so shed a tear. Particularly when we are living with chronic illness that in turn causes other conditions it is hard work. Life without illness is hard work, illness just adds to that work and it is work we cant leave in the office. It comes with us everyday, every night there is no relenting.

It is ok to cry wether it is publicly or privately you are not weak for crying. It can be cathartic and actually help unload some of the stress we feel which in turn can potentially mean our conditions can become easier to manage especially if stress if a trigger to cause conditions to flare up.

 

Back feeling confident

After a good few days feeling totally down in the dumps, sorry for myself and thinking the light that was at the end of the tunnel had totally gone out I am feeling more confident and the light is coming back and I don’t think all the hard work I have put in get better is wasted. It was still worth it and this was only a minor set back in a road to proper asthma control and good health.

To say I thought that I was back to square one would be an under statement. I had visions of spending more time off work and more time in hospital and even more time on high dose oral steroids. I was full of doom and gloom and felt the best thing to do was give up. I found it hard not to think like that given my past history for getting back on track and then it all going down the plug. I really didnt want that to happen again but almost felt it was inevitable.

I managed to change my mindset and think that this time I was stronger, fitter and mentally in a better head space that I can beat this and will get back on top and enjoying myself again. I can’t expect to not have set backs and unless I lived in a bubble I would not be immune to getting colds and infections so just need to get on with it and be sensible. After some vitamin C, early nights and anti biotics I am starting to feel better. I am finding my best time of day is the afternoon. First thing in the morning I am not so good and again last thing at night I get this hacking cough but nights are always a bit tricky for me anyway. For as long as I remember my asthma at night has always been bad so for it to be bad just now is not surprising.

I must add work I have done with a psychologist who looks in to coping methods for people with long term conditions has helped as well. Changing how I view set backs and not see them as failure has helped. I would often see a set back as failed to achieve control rather than a natural hiccup that comes with having a long term condition that probably won’t go away. Life is always going to have hiccups but it is how I deal with them is important to recovering and keeping well. Accepting that things happen and sometimes there is no control or no way to stop them but learn from what has happened and take positives from it.

It s easy for me to sit now and write this now but a few days ago I would never have been able to look to the good or rationalise this blip as I have today and I hope that I will in time be able to not see every dip as going back to square one but rather view it as it is.. a dip that will go up again and back to where I was and not a slippery downhill.

Its good to see things going the right way and changing the way I am thinking about it all. It has helped me cope a lot with it now.

My Fight Against Asthma- the app

Living with any chronic health condition can be tricky. Not only dealing with how you are feeling on a daily basis but everything that goes with it to keep yourself well- the medication, self management plans, anticipatory care plan, Drs appointments, hospital appointments. This is just a small selection of some of the things you need to juggle and remember to achieve the best possible health you can for yourself.

When my asthma was very controlled and not that bothersome all I needed to keep track of was my peak flow diary and making sure I had enough of my inhalers. But now it is a totally different picture. I have a folder full of various documents to keep track of what is going on and who I am seeing when. It can become very confusing and often things do get forgotten. Despite my efforts I have never found an easy manageable way to keep everything organised and in one place, but that was until now. In the very early hours one morning I stumbled across a post online advertising My Fight Against Asthma app which aims for the user to have an easy place to store everything about them and their condition. The creator was looking for people to test the app which I was keen to do. I have now been using the app for just under a week now and have found it one of the best I have used.

Why do I feel it is one of the best? Because the creator of the app suffers from a chronic health condition himself so has first hand experience of the difficulties conditions can throw up and also what people want to be make living with their condition easier.

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Who is behind My Fight Against Asthma??

Heres is the developers story:

“I have Cystic Fibrosis and I got really sick a couple years ago. I stayed sick for quite some time so last March 2014 I decided I wanted to start learning how to make apps to help people with CF. I released my first app (My Fight Against Cystic Fibrosis) in October 2014 and then wanted to expand the “My Fight” series to help other communities. I reached out to a few different communities that had some type of illness and I got the best response from the Asthma community. I then quickly got a group of people together to help me better understand how asthma is treated and what kinds of things they track and would like to see in an app that they could use daily. I started designing the app, got it approved by the group that I put together, and started programming it in February 2015. I wanted the app to be something that would help patients manage their health in a more convenient and efficient way. The best way I found that to be is to directly stay in touch with the patients I’m making the app for and develop the app around their needs and requests. Instead of an app made by a pharmaceutical company I wanted to develop an app inspired solely by “the people” trying to help “the people” of the Asthma community.”

Over the years I have tried various apps which have been produced to try and keep track of what is going on with my asthma but have found them all very restrictive in what they can offer. Looking back I wonder if this is because they are created by companies in association with their pharmaceutical products and don’t have much knowledge about what the needs to the person is.

What makes this app so good??

It is user friendly and easy to understand. For me a couple of functions stand out which no other apps I have seen have. First you have tabs to record all different areas of your asthma.

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Recording peak flow is one thing every asthmatic should do almost from pre diagnosis stage. This section of the app I particularly like because not only can you define where your red, yellow and green zones but you can input comments about what action to take when your peak flow results falls in a certain zone. These comments can be specific to you rather than the more generic plans which will often instruct you to increase you inhaler and seek medical attention (or along those lines). Being able to do this means those with slightly different action plans can input their individual needs.

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Another aspect of the app is that you can set reminders for a variety of different things: medication, appointments and peak flows. You can be alerted by setting an alarm in the app to remind you to take your meds or when you have drs appointments. there is also a section for knowing when to request a repeat prescription.

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As the app is still in the development stages functions are being altered to make them really fit the needs of those with asthma. Having patient input while designing this app I think has made it stand out from other apps. I cannot wait till the app is released as I think it will be a very useful tool for those who find it hard to keep track of everything but also those who are newly diagnosed or people who have trouble getting into a routine and remembering to take their medication. Setting alerts can prompt you so you never miss a dose.

If you are not sure about what information to put in the various sections of the app such as the peak flow ranges you can speak to your asthma nurse for help in determining what is needed.

Are you interested in this app and want to test it too leave a comment on this post and I will pass it on.

(I do want to say that all the thoughts about the app are my own!)

 

Learning to be kind to yourself.

Recently I have found it really tough trying to deal with everyday life and my asthma together. It felt like a full-time job just staying well, making sure I took all my treatment etc and then live life too. It was just way too much physically and mentally.

When dealing with physical health troubles there is so much we push ourselves to do and can often end up pushing ourselves too far because you have that spell of feeling well so everything gets crammed into that small window of time with no care for how you will feel after. This is something I am very guilty of. I will feel well so do everything and anything just like others do. And I feel great doing it. The adrenaline rush of being with friends and just being out and about leaves you feeling on a high and part of “normal” society. Soon after you crash back to earth with a bang.

I find the bang leaves me focusing on all the negatives about what I now can’t do rather than all I have done to end up in such a situation. I find I can’t rationalise sometimes that I did all this good stuff and that is why I feel crap. I think the other way round. I feel crap so now I can’t do what I want to do.

It is a cycle of peaks and troughs with each peak getting that little bit smaller and the trough getting that little bit bigger.

I realised this was not helping me physically or mentally. I went to see a psychologist who specialises in dealing with people with long term health conditions. He actually wrote my anticipatory care plan for when in hospital so know him already and had a good rapport so was looking forward to the appointment.

I went in with a plan of what I wanted to discuss and what I wanted to achieve. Something I was told not to do as I would then set myself up for not achieving goals I set myself but anyway do I ever listen…it seems no!

I took loads from the appointment but 2 things really helped an can be put to use straight away but may take some practice before I get it right.

The first was to allow me to be kind to myself. It took me a while to understand this but after explaining about how people have a part of their brain which determines their drive and another part which allows them to be kind to self I could see where I was going wrong.

From my background of playing sport and being very competitive with it I am very driven. I want to succeed at the best I can, I won’t quit until I reached a goal. I do this in all parts of my life. I will drive and drive and keeping pushing to be the best and achieve the best. In some settings this is good- particularly sport but in health this is not good and its not doing me any favours. I do not allow kindness to self. I tried to argue with the idea that I did and this was when I took a break in a day and rested but this was not what he was meaning. He descried it as lifting my foot off the pedal and applying the break a little bit. I see resting now as something I have to do because if I don’t I will fail at what I want- but in doing this I am not actually resting my body as I am driving myself to rest. I need to accept that my body won’t do all I want it to do but if I allow myself time, rest and recovery I will be able to do more and more often rather than fitting everything in in a short space of time like I do just now!

I have put this in practice already by planning my week better and having evenings I call rest evenings where I go to bed earlier than usual and read my book and try to switch off. I have also planned my weekends to allow myself more time to rest for the week but still doing somethings for example I have a awards dinner on Friday night and lacrosse on saturday afternoon (not sure how much I will play but it still counts), so for Sunday I have planned to spend the morning getting ready for the week and the afternoon watching a film and just chilling out. Have a really good dinner and be ready for the next week. I am not sure how this will go but I hope that I may feel good for it. Time will tell.

The other thing we discussed a lot was about CONTROL. Being a naturally driven person I like to have control in my life and control of my life. I like to have my destiny in my hands and therefore my future dictated by my decisions. This is something I don’t have and have not had for a long time. In the asthma world so to speak to word control is all over the place- mainly when discussing how stable or unstable your asthma is and how much control or lack of you have, we do the asthma control test again to check control. It feels I can never get away from it yet strive to have it all the time.

I desperately want control of my asthma so I can live my life without fear of attacks, or fear of losing my job, without dealing with medications, side effects of medication, not having to go to numerous hospital appointments throughout the year. It would be so great to say I had control. Instead of telling everyone I am trying to get control but not there yet. It often feels I have no control over it. There is no prediction to when I may or may not have an attack, I cannot control the uncontrollable such as external factors like cigarette smoke, pollen, building works. I can’t even really control my medication. The only control I do have is about taking my medication. I control when I take it but other than that there is not much.

I need to work on not needing to have control. And rationalise that there are something you can’t control but to focus on controlling what I can. In doing this I won’t set myself up for failures and frustration when I don’t get to where I want to. By planning my time better I am controlling when I can do things and when I can’t rather than having to listen to when my body has had enough and stop. By planning things and get a good balance I hope I won’t  go back to the ways of filling my good days with loads and then suffering after.

Only time will tell if these things work or not but fingers crossed they do!