M.E and the UK Cost of Living Crisis

**Sensitive topic**

From the outset, I want to make it clear that I consider myself to be in a place of privilege where this cost of living crisis is concerned. I wrote about my own personal financial situation a few years ago, and those circumstances have not changed. I am fortunate to have a good relationship with/live with my ‘elderly’ parents who no longer have a mortgage to worry about. Whilst we will be impacted by this cost of living crisis, we are not at risk of losing our home and should be able to accumulatively tighten belts to meet the cost of our bills. However, this is a privileged position to be in and I acknowledge that.

I have been directly contacted by four people living with M.E in recent weeks and I have no doubt that UK M.E charities will have been inundated with requests for advice and signposting.

I’m hoping this blog will prove to be helpful to those who are worrying and losing sleep over what is happening now and what is to come in the next 3-6 months.

There is no shame in being in financial hardship

Struggling with money does not come with the add-on that you are bad with money or have made poor life choices. Financial hardship is just 2 pay packets away from the majority of people: redundancy, ill health, carer responsibilities and many other factors all count towards the inability to pay bills and/or feed children. Yet, guilt is a common emotion felt by those who are struggling financially. It’s not your fault – it is usually due to a series of completely unpredictable and uncontrollable events.

We are where we are, so what can we do about it?

In the media, I keep hearing people saying ‘I’ll have to work more to be able to cover bills’ or ‘just increase your income’. How do you do that when you have an energy-limiting disease that means you can only work a restricted number of hours per week or that has possibly made you house or bed bound? In this instance, ‘just increase your income’ means claiming benefits or benefiting from financial schemes set up specifically to help people in need. THAT’S YOU.

To be clear, I have failed twice myself when trying to apply for Personal Independence Payments and I know how traumatic and stressful the whole process is for many people. But, if you are not yet receiving PIP and have a confirmed diagnosis of M.E or M.E/C.F.S, you are entitled to that money. Please apply, there are many organisations ‘out there’ who can help with the application. I’ll list a few helpful organisations at the bottom of this blog. Most applications are turned down initially, but perseverance pays off and many decisions are overturned during the appeal process. Applications can take many months so even if you are not yet struggling I would advise you to pre-empt that extra money will be needed in 6- 12 months’ time. Set the wheels in motion.

There are other pots of cash that you are entitled to, many of which are included in this Scope article – Why disabled people are at the centre of the cost of living crisis

Contact your suppliers – Make the call

Too many of us are too ashamed to phone our gas, electric, water, broadband company to explain that we cannot afford our bills. I’ve been there, it takes balls to make that phone-call. But it is a phone-call you must make. Sticking your fingers in your ears and hiding unopened bills does not make the issue disappear. If you are too sick to make the phone-call, there are organisations who can liaise with these companies on your behalf. One such organisation is Money Buddies, they also have regional affiliated organisations so they will have support available in your area. They have experience of helping disabled people too – they ‘get it’.

Discuss with your suppliers what you can afford to pay, something is often better than nothing and they may be able to come up with a workable payment plan for you.

Cutting back

I’m not going to state the blooming obvious other than to say, you know you may need to cut back on non-essential items. You know what is/is not essential in your life. I know it is much, MUCH, more complicated than simply cancelling Netflix as has been suggested by some ‘commentators’. However, is there any way you can lower your monthly outgoings without impacting your quality of life in terms of heat and food? This is where Money Buddies and similar organisations excel – they help to lower your outgoings by creating a weekly/monthly budget. That said I know that many of you are on the bare bones already. There is nothing is left to cut back. I know that. Where this is the case, I am hoping there are pots of cash available for you to benefit from – as mentioned above.

M.E, cost of living concerns.

Heating

I won’t lie, I am genuinely concerned that M.E patients will be hit particularly hard by this cost of living crisis. M.E patients have difficulties regulating their temperature, we often shiver on warm days. Some of us have to hike the central heating up when we simply cannot warm up, or need to wear/lay underneath LOTS of layers to try and warm up (whilst still having the heating on at a ‘low level’). I worry that many will turn their heating off to save money. I can completely understand why people will do this, but please make sure you have hot water bottles/microwavable wheat bags in the house to keep your body warm when your internal mechanism has gone haywire.

I am particularly concerned about bedbound patients who may be laying static in cold rooms. I think it is obvious that turning the heating off for these severely affected patients will lead to further health complications. If you are bedbound and are reading this, please get in touch with me or M.E charities if you need help/advice/support.

‘Warm banks’

What are they?

I doubt that this new idea will benefit many people living with M.E as you need energy to get to these places and we would need somewhere to recline/lay down not just sit. Also, during a pandemic with many of us choosing to continue to shield and avoid enclosed spaces, it wouldn’t surprise me if minimal M.E patients sought out their local ‘warm bank’. BUT, this is an option for those who choose to/are able to seek warmth outside of their own home. Please remember to take COVID precautions in enclosed spaces. NOTE TO SELF – contact some ‘warm banks’ to see if they have options for those who need to recline/lay down – update to come.

Eating

This is a particularly complex issue (when is it ever uncomplicated with M.E?!) and ranges from those who don’t have the energy to stand and cook a meal, to those who are so sick they cannot ‘eat’ other than through a tube. I know that I personally only eat ‘2 minutes noodles’ on post-exertional malaise days if my parents are away and cannot cook my meals for me. It’s food but not necessarily nutritious! I’m not sure a diet that consists of entirely noodles with flavouring would be considered a good thing by any nutritionists, but it fills the hunger gap as a temporary measure. I often see tweets from people living with M.E about nutritious meals they’ve managed to cook for themselves using very little energy on a strict budget. Perhaps there is a cookbook for M.E patients? I’d love to know so please comment on this blog if you know of one.

UK residents will no doubt have heard of Jack Monroe ‘Bootstrap cook’. Jack is AWESOME and has written extensively about living on a very tight budget and has written cookbooks filled with low-cost recipes. OBVIOUSLY, this is only applicable for M.E patients are are physically able to cook meals (or carers/support/family members). But, Jack offers suggestions re. slow cookers and one-pot meals. All of which would be beneficial for M.E patients trying to keep food costs down whilst keeping an eye on their energy usage (personal and gas/electric). Jack has chronic illnesses and so many of the recipes are appropriate for chronically sick people. Well worth checking out.

Homes

I have been an advocate since 2014, I have seen too many times that a M.E patient has become homeless through no fault of their own. I simply cannot compute how an M.E-affected body reacts to that level of stress, overload, and having no control over the environment they find themselves in. As a community, I want us to do as much as we can to support everyone in need to prevent this from happening on a much larger scale. Please signpost people to the organisations mentioned in this blog and if it is YOU that is struggling please reach out; there is support here and elsewhere.

Suicide

As a community, we know we have a higher than average suicide rate, and that’s outside of a pandemic and cost of living crisis. Please keep an eye on one another (standard practice for our community I know, but we need to ‘double down’ now), remind others that they are not alone and that, one day, we will reach the other side of this crisis. But, I have no doubt that it will be very tough in the months ahead. Specifically in the UK, please call the Samaritans. There is ALWAYS someone on the other end of the phone – call 116 123 (free).