In my previous post, I wrote about some things I achieved in 2021 and now I would like to focus on what my goals are for this new year. At the start of every year, we see many posts on this topic and the themes are so varied, from eating better to becoming a millionaire. Over the years, I have been guilty of creating challenges, which were too big for me, or were at the wrong time. There were many times when I resolved to stop smoking and failed less than a month later. However, the right day came, and I stopped with the odd relapse.
My Rules
My chronic illness is a sleeping beast. If I tread carefully, not doing anything hastily, I can stop it from waking fully. It will open an eye occasionally, causing me to trip, and I will have to recover. Those eyes have poison in them. These are the rules I need to obey, no matter what goals I set.
- Sleep well: I must get at least 8.5 hours sleep every night and I don’t have the luxury of having a flexible bedtime. My routine must be consistent.
- Eat well: No junk or processed foods, staying away from dairy & beef. The way I achieve this is to always prepare food from scratch, using the best ingredients we can. There will be the odd day when I travel when these rules are broken, or for festive breaks, but I must return to the usual diet.
- Exercise: My preference is to go for a walk midday, weather permitting, and if this isn’t possible, I will use my exercise bike to keep the legs working. Outdoors is better, fresh air and no distractions, plus my wife accompanies me, and we have a great chat as we walk. Positive physically and mentally.
- Work a maximum of 10-12 hours per week, and in 30-40 minute blocks: Experience has shown me I must adhere to this, otherwise I can lose a day or two from my plans. It happens and I pay the price. Usually this is planned, so it isn’t a shock, just the fine for breaking this rule.
My 2022 Goals
With these rules in mind, I have decided these are the fundamental goals I have this year and I have a good idea of the steps I need to take to achieve them.
Patient Advocacy
In my last post, I wrote about how being an advocate for patients has been an incredibly positive experience for me. My work is in four areas and my goal for 2022 is to continue with this with more focus:
Pharmaceutical: Over the last few years I have worked with several companies and the tasks range from helping with the creation of a plan on how to use the space in a research building to form stronger ties between researchers and patients, to designing apps for use by users of the health system and as a member of Patient Advisory Panel’s. I enjoy this work and it allows me to help improve the quality of life of other patients.
Academic/Research: In Ireland, the Health Research Board has created an environment, through the way it allocates its funding, which supports the inclusion of patients in how research is conducted. We are not just the recipients of a therapy, but part of the team which designs the therapy, and the study which will show if it is effective or not. The COBMS trial is an example and over the next six months, I will focus on how I can help to influence research. This will happen through several channels, they key ones are IPPOSI and EUPATI. I will continue my work with both organisations, helping other patients to become involved in research.
Government: I am a member of the Health Service Executive’s (Ireland’s health service) National Research Committee, the Research and Development PPI Reference Group and the Research Governance Implementation Working Group. I will continue these roles and I am also doing some work on how the government supports people living with disabilities. Over the last month, I have prepared a brief on what people living with disabilities need, so they can contribute more to society. I wonder what will happen to this. I am also working with the Neurological Alliance of Ireland to help get more Neurology nurses, as we have only a third of what is needed. Already there is some progress with new posts being advertised.
MS Ireland: Last year, I started the Progressive MS Webinar Series and Podcast with MS Ireland. It has been a success and we will have the final webinar of the first season on January 16, where we will talk about relationships. Once this is done, we will start season two. This will probably continue to be once a month and I have already spoken to a few prospective interviewees. When the schedule is complete, I will include this in my social media content.
COBMS
I have been working as an Embedded Patient Researcher on this trial (www.cob-ms.com) since July 2019 and it will finish at the end of June this year. The main research is complete and now we begin the process of analysis, reporting and sharing the results (researchers call this dissemination). I will focus on the assessment of how well the trial used patients in the day to day running of the study. This will focus on how the Patient Advisory Panel, the patients on the Trial Steering Committee, the Embedded Patient Researcher (me) interacted with the other researchers and if this group of patients impacted the conduct of the research.
The information I gather will then become a Research Paper about Patient and Public Involvement (PPI) to be published, hopefully. We will then have to share the results of this, and the results of the major study, with the public, as well as other researchers. I will be part of the team doing this and I am sure I will write about it here.
A 30 Minute Life
Over the last year, I have not paid enough attention to my blog, podcast and social media. This year I will plan what I will write about and share. I need to be focused on the content I write and share. This requires a plan and for the last month and a half I have been talking to several bloggers about this and what I should do. Consistency and focus are two words which were repeated many times. I have to thank Marie Ennis O’Connor, Chris Lewis and Rachel Lynch for their help. The conversations I had with them have pointed me in the right direction.
One thing I was thinking of doing was to generate an income from the blog, with ads, affiliate products, and other income generating ideas, but this will not happen now. I realise the one thing I really dislike on websites is being bombarded with all manner of ads. It is off-putting and would alienate me if I saw it, so I can only imagine what my readers would think. I have decided to set up a separate website, Fresh Coffee Store, as a way of generating income (you can read more about why, below).
Learn to Live with MS Course
Over the last few years, I have realised there is a lot of information available for people living with MS about medications and therapies, but almost nothing about how to live successfully with this disease. There are so many things I wish I was told about when I was diagnosed, which would have made my life now much easier.
To remedy this, I am putting together a training course which will look at:
- Work
- Social
- Home
- Physical Health
- Mental Health
I am putting together a team of experts in each of these areas to help me with the training and it will be available online and as a book. To make this a valuable resource, I am now getting the experts and I hope the complete project will be ready to record in July, after I finish my work on the COBMS trial.
Fresh Coffee Store
As I mentioned in my plans for this blog, I was thinking of using this site to generate an income for myself, which would support my advocacy and the blog. I need a consistent source of income and selling coffee to my readers in the USA seemed like a great way of people supporting me, without them having to give me a donation. They can just switch where they purchase their coffee from where they currently buy it to this new online store. They roasted the coffee after it is ordered and will be with them in 5-10 working days. To make life even easier, I have set up a subscription service, so the coffee arrives every week (12.5% discount + FREE shipping) or month (10% discount + FREE shipping), depending on what you need. My readers get a good deal and I have an income. Everyone is a winner, plus my blog will not have tons of ads and pop-ups. Use this Discount Code for an initial 15% discount: A30MinuteLife15%
Now to Make these a Reality
Writing these goals is important for me and by sharing them here, I will be more accountable. Reading through them, I see I am building on an existing body of work. I am becoming more focused on what I do, so I can be more effective. My rules have forced me to create a path. Now I know what I plan to do, it will be much easier to make these happen.
What goal do you have for 2022? What steps are you taking to make them happen? Do have the same rules? Let me know in the comments below.
