A letter I would love to write to my…..

I am going to do a series of these blog posts. When I was last in hospital and immediately post discharge I was left feeling very frustrated and have continued to feel that way. I always feel like I cant quite say to the Dr’s and nurses what i want to. Not because they deliberately avoid it but they just don’t ask the question or there is not the right time to bring it up. While on the ward I started various letters that I wanted to write. One to my asthma, one to the nurses looking after me, one to the drs looking after me, one to my consultant and then one to my parents. I think the important ones are the ones to the people looking after me while in hospital and then the one to my consultant.

I am going to start with the letter to those looking after me in hospital.

(this is just a wish I could say. I know they are all doing their best etc so this is an ideal world)

To all the Dr’s,

First I want to Thank you all for saving my life on so many occasions. I really am truly grateful. The evil drugs you pump me full of, the numerous stabbings to get an arterial blood gas, or trying to find a vein for IV access I thank you. In the state of emergency when I am taken from my home by ambulance and rushed with sirens blaring and lights flashing to the nearest hospital where Drs are often waiting to take me into the resuscitation room to start saving my life and get my lungs back working how they should. At this point I cannot fault the Dr’s.

It is once things stabilise that I get frustrated with the Dr’s. Asthma is so complex often the smallest thing can trigger bronchospasm and when on the ward this happens all the time, a spray of deodorant, or flowers, or smoke carried in on clothes is all hazards that we cant avoid yet pose a huge threat to us. So often when this occurs and I have some nebulisers I get frustrated when reviewed by Drs who then say your numbers are ok just calm down. I want to scream at you at this point. I know my f**king numbers are ok but they won’t be soon and I am getting tired. I don’t want to be patronised I just want to know what is going on. What my chest sounds like, if the nebulisers are helping and making a difference to what you hear. I want you come to back once things have settled just so I know that I am not missing anything. So I know that I am stable and can rest easy over night.

Once things are more stable and I am looking for home I want someone to care and make sure that there is nothing I struggle with. So many times I have been discharged home not able to really cope, unable to walk independently, washing and dressing a struggle leaving me in my PJ’s all day. Often we get overlooked because we are young. It is assumed we will manage and not need any physio or occupational therapy support but we don’t always and often too embarrassed to ask for some help. At discharge from my last admission due to complications with my leg I was still needing help to stand up from the toilet, I couldn’t get myself up to the shower and shower without falling over. I didnt want to bring it up that I couldn’t do these things but may well have if i was asked about it. This goes along with mental health. My brain was a mess when I was discharged. All I wanted was someone to ask me if I was ok and how I was coping. It is so much easier to answer a question than bring up a subject.

Once home and then attending out patient clinic as a younger patient (which is really depressing when you are the youngest person by about 40 or 50 years) who lives with a chronic condition we just want to be asked what can be done to help us live life to the best we can despite our health. We want to live life and be able to go out for dinner and be spontaneous but we cant. When our condition becomes more complex it is so hard hearing that there is now more medications that can be tried and you are on the maximum medication that you can be. Hearing this is terrifying, we have our life ahead of us yet we have no more options in terms of treatment for our condition is a terrifying prospect. It is all about the language used.

I admire the work you do and the how you have saved my life but sometimes we just need that small question to check how we are and if we are good or not. It is hard work living with a daily routine revolving around medications and it can get too much especially when the side effects of medication cause more conditions yet you cant stop taking it. I am often scared of what is happening and what our life is like.

I would love to be able to spill all my views out to my Dr’s either while inpatient or outpatient but I never would be able to and I am sure so many others will feel the same.

I guess if there are any Dr’s reading this please thing about your patient and what might they be facing. Just because we are young does not mean we don’t need help. This is not meant to be Drs are bad but it is just some of the things I have come across and I really wish I could say something at the time but often there is no time.

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