My skincare routine

Monday

On a Monday I use the Elemis Rose Gentle Exfoliator along with the Pixi Rose Glow Tonic mist.

The rest of the week

On all the other days I use the Elimis Superfood Gel Cleanser along with the Elimis Refreshing Ginseng Tonic mist. I use reusable bamboo pads which I use to wet my face before applying the cleanser and also to wash the cleanser off and then I just pop the pads in a mesh bag and was them ready to use again.

I’m not using it at the moment as my skin is a bit sensitive with eczema at the moment but I was using a Magnitone Cleansing Brush which is electric. The charge lasts a while and when looked after well so does the brush heads. I’d highly recommend this cleansing brush as it saves me a lot of energy when I use it and it makes washing my face more effortless so it’s great if you have limited energy or you’re rushed for time with skincare routine. It’s also great for washing makeup off your face.

Once or twice a week I also use the Elimis Lavender Repair Mask.

Sometimes alternatively I use sheet face masks, my favourite brands are Simple, Oh K! and Garnier.

When I’m washing my makeup off at the sink I use these face cleansing cuffs around my wrists which are great as it stops the water running down my arms and like my bamboo pads they can be washed.

Additional products 

My moisturiser is the Pixi Vitamin C lotion. For eye cream I use a product by Bobbi Brown.

I’m not using it at the moment but I also have the Pixi Glow Tonic Serum.

I also use the Pixi Glow Mist to refresh my face during day and also along with my makeup.

Why I use Elimis products 

I always used to use Pixi for my skincare but now I use a lot of Elimis products. I use Elimis as I can get skincare advice and advice on what products are best for me from the spa where I buy them from - I also get a 30% discount so the products come to the same price as what I pay for Pixi skincare products along with loyalty points added to my account.

Severe M.E. Day 2024

Around 1 in 4 people like myself have Severe or Very Severe M.E. - this leaves those people mostly or entirely housebound or bed bound.

What I wanted to say about severe M.E. this year is the chronic lack of services and support there is for people in the UK. It does vary depending where you live but it can be very difficult to access care especially when you can’t travel. Where I live in my NHS no access to services exist at all.

There is also the general lack of understanding from professionals from GPs to hospital staff. I’ve too experienced this. In my last GP appointment my GP had never heard of M.E. and during the telephone appointment she googled Myalgic Encephalomyelitis and then I directed her to a specific M.E. charity’s website for information. There have even been cases when someone with very severe M.E. has been admitted to hospital and due to the severity of their M.E. they have been unable to talk, eat or drink and due to lack of understanding of M.E. and just how severe it can become for some people they aren’t believed and instead are sectioned under the Mental Health Act.

So many times now I see petitions to get individual with severe/very severe M.E. the care they need and desperately deserve whilst in hospital. Such as not being sent to a psychiatric unit or not having their bed raised at the head for tube feeding due to their severe orthostatic intolerance (a key feature of M.E.) or trying to get a transfer to a hospital that is better equipped for their M.E.

Just recently Maeve Boothby-O’Neill who had severe M.E. sadly passed away after being discharged from hospital. Her family felt that opportunities were missed and her death could have been avoided. Read BBC article here

The fact of the matter is that this illness takes lives. It took Maeve’s life and several years ago it also took Merryn Croft’s life too and also Emily Collingridge (who wrote a fantastic resource book ‘Severe M.E.: A Guide to Living’ - lives taken far too soon, and countless other people have also lost their life and countless more people will too. It’s time M.E. needs to be taken more seriously.

Jessica Taylor-Bearman also wrote a great collection of three books. I’ve only managed to read the first one so far as it’s on audio ‘The Girl Behind Dark Glasses’ but Jessica wrote about the severity of her M.E.; how it took away her ability to move, speak, eat and drink but also the mistreatment she received at the hands of those meant to be caring for her from people like her consultant she named ‘Boss Man’ to whom she couldn’t fight back against.

My M.E. has thankfully never become this severe but I have been mistreated by agency carers and I know what it’s like to have doctors and other care staff neglect your needs and not understand your illness or be able to give you the care, support and services you desperately need. 

This all makes me feel invisible and incredibly alone. It’s so incredibly hard having doctors not knowing my own illness, the illness that affects me the most and the one that I’m needing this most help with. Because I’m not getting any support and my GP practice are useless and with the way my M.E. has been worsening a little gradually in all honesty I am scared of my M.E. worsening and not being able to get the help and understanding I need, just like so many others with this illness.

People with M.E. deserve better. We should have access to specialist services regardless of where we live. NICE Guidelines also need to be followed including the part about meeting people with severe M.E.’s care needs in hospital (from my experience because M.E. isn’t always known about so are the NICE Guidelines, or the hospital just can’t accommodate our needs according to the guidelines). Social care also needs to improve and there needs to be more support given to unpaid caregivers.

Finally people with M.E. won’t be forgotten about. We may be out of sight from the world but we will keep campaigning until we get the care we need and deserve. 

Paying for a cure

When you’re chronically ill the vast majority of people would do anything to get well. That was me several years ago even before my health deteriorated to the point at where I am now. I’d been ill for several years and I was desperate to feel even the tiniest bit better; to get some relief from my symptoms and to maybe, just maybe get to a point where I became well enough that I could get my old life back, even if it was just a little bit of my old life back and I was will to do or try anything to get this.

I spent so so so much money trying to get well. More money than I dare think I spent and in the end it was all for nothing and I didn’t get my magic cure. I tried so so hard and I kept going for so long before I realised that I had to stop trying and that what I was doing wasn’t working.

It started out with my stepmum getting talking to a stranger in the free-from aisle in the supermarket. My stepmum and this stranger got talking about her health problems and my health problems and this stranger recommended this private integrative medicine centre and this specialist doctor at the centre that she went to and gave really positive recommendations so she gave the details of the clinic to pass onto me. From there I made an appointment with this doctor. I thought it was worth a try especially as I wasn’t getting much care from the NHS. I’d received my M.E. diagnosis but after this no further care was given to me; I’d felt like I’d been left to deal with my M.E. on my own. At this time and the time of my diagnosis my M.E. was moderate. So yes I was struggling with my M.E. especially and I wanted to see this private integrative doctor to approach my care holistically as I’m more of a fan of this approach to care than the medical model; I also wanted to see what she could offer me and hopefully give me some relief from my symptoms.

I paid for regular appointments with the doctor to talk about my symptoms and she told me about things within integrative and homeopathic medicine that could help with my different symptoms. I paid for medicines that she prescribed such as homeopathic remedies - I’d try one and it wouldn’t help so the dose would increase still no help so then I’d try something else. I was also prescribed herbal remedies such as tea to help with my digestion and another for colds and flu. One herbal remedy did help that was for my chest. I was also prescribed multiple supplements such as an echinacea tincture for my immune system - I still take echinacea I do find I helps my immune system. All these homeopathic medicines, supplements, herbal medicines I had to repeatedly pay for myself to stay on top of what I was being prescribed.

As well as the doctor appointments and all the prescriptions it was also recommended I have acupuncture. What made it feel more credible was the lady who did my acupuncture had a BSc in Acupuncture so I felt in safer hands. So on top of everything above I paid for regular acupuncture too. As well as the acupuncture I was also prescribed massage therapy so that was an even further regular expense that I paid.

Another hidden expense was the fact that I can’t drive due to my seizures so the vast majority of the time I paid for taxis to and from my various appointments at this integrative health centre.

I also once had a session with the nutritionist at the centre and started the macro diet she recommended me in the hope that would help my fatigue. She did offer for a further fee to draw up a meal plan but I couldn’t afford this.

Even though I wasn’t seeing much change in my health I kept going to this centre for quite some time. I think I just kept going for the acupuncture and prescribed massages and seeing the doctor and paying for my various prescriptions and following this macro diet hoping that eventually everything I was doing would soon kick in and I’d start seeing an improvement in my symptoms. I did feel some improvement just a little occasionally but it wouldn’t be a permanent improvement or a significant improvement.

I finally stopped going as the appointment fees kept slowing increasing and it got to a point where one appointment was just too expensive and I wouldn’t be able to financially continue going to the centre.

I think it was then that I realised that financially I couldn’t continue with what I was doing and upon reflection I realised that I hadn’t seen the changes in my health I’d hoped to see when I first set out on my first appointment. It wasn’t until later that I reflected upon how much money I’d truly spent desperately trying to get well and still to this day I daren’t think how much I actually spent, or wasted, trying to pay to get well. Yes I had turned some tests the doctor recommended down because of the cost but then what about everything else I’d paid for. I felt totally gullible for all the false hope I’d been given.

This hasn’t been the last time I’ve paid for something in the hope it will help me. I tried, twice, this gut live good-for-you bacteria drink. This time I paid for it on a discount and didn’t go for it full price as the full price monthly cost would have been too costly. I think I’m a bit wiser now about not falling for the price of false miracle cures.

I think chronically ill and disabled people are more vulnerable to these products and to clinicians who are trying to sell miracle cures because we so desperately want to be well again, or have some relief from our symptoms. These products and treatments are often not cheap and many of us are unable to work or can only work part-time so our income is limited and disability benefits like PIP only stretch so far.

I know a few of my friends, several of which have M.E., have turned to private healthcare to get the care they need because they’re not getting it on the NHS. I know I’ve contemplated seeing a private M.E. specialist myself too for the same reasons. It’s not fair that we’re having to pay or fundraise for own care when we have a National Health Service but often it’s a postcode lottery as to where you live that determines what specialist services you can access - and don’t get me started on GP’s, that’s a whole post for another day.

I still pay for some things, like my massage therapy with Hollie but I now know in reality that it’s not going to be my magic cure and it’s not going to make me completely better. I know that it just supplements my care and I find it helps give me some relief but it won’t make a permanent change or improvement. The same for the supplements I take, they’re just supplements, not magic pills.