Ways I’ve found to help my pain

September is Pain Awareness Month.

Pain is something I’m all too familiar with. Having Ehlers-Danlos, M.E. and chronic migraines I live in a constant level of pain. My pain levels vary unpredictably throughout the day; there are times when I can tolerate my pain and other times my pain leaves me crying in despair when I’ve tried every option I have to ease my pain.

Because all of my illnesses cause me pain I experience every type of pain there is. I take lots of different medications to help relieve the different symptoms that cause the types of pain I experience, however I’m not a person who just relies upon medication alone. I’ll often try other options first as well as supplement my medication with other things to help manage my pain.

Here are some of the things I have found help to relieve my pain:

Massage

The biggest thing that I’ve found to help relieve my pain is massage therapy. I see a massage therapist called Hollie who specialises in treating people with medical conditions. I see Hollie regularly and very often no two massages are the same as Hollie treats how my symptoms including my pain has been around that time. I also find the time to relax whilst I’m having a massage good for my emotional wellbeing and that has a positive impact on my physical wellbeing including my pain levels too.

Massage therapy also doesn’t have to be painful. Such as for me Hollie works at a pressure I can tolerate and she’s careful around my joints to avoid subluxations or dislocations. As well when my back is being massaged instead of uncomfortably being laid on my stomach I lay on my side hugging a pillow. Hollie’s massage bed is also similar to a profiling bed so she can adjust the bed in a way in which I’m feeling comfortable. She’ll also play the music on a really low volume for my noise hypersensitivity.

Mindfulness & Body scanning

I find mindfulness helps me with my pain. There are lots of different types of mindfulness exercises and different people get on with different ones and I too find some work for me while others don’t.

I especially like visualisation and breathing exercise mindfulness meditations. I also got introduced to body scanning by my Pain Psychologist. Body scanning is a type of mindfulness as it’s being mindfully aware of your body. I find doing a quick body scan allows me to be self-aware of how my whole body feels without fixating on a particularly painful part of my body.

Rest

I find rest really important to manage my pain as well as my other symptoms. I usually rest listening to soundscapes (a type of mindfulness). Resting just allows my body to just STOP doing anything that is physical or cognitive etc and to just switch off for a while, usually 30-60 minutes though sometimes longer. This allows me to then carry on with my day once I’m rested.

Heat and hot baths

I’m a big user of heat to help with my pain. Whatever the weather I’ll use hot water bottles, electric heat pads/blankets, microwave Warmies etc. I have a standard hot water bottle but I also have a YuYu hot water bottle which is a long hot water bottle that I can wrap around my back or stomach or over my hips or shoulders or along my leg etc.

I also find my daily hot bath helps to relieve my pain too. Sometimes I add lavender Epsom salts into my bath to help relieve my muscle pain and spasms and lavender has natural healing properties.

Distraction 

I feel like I’m often trying to distract myself from my pain. I find doing something to take my mind off my pain and other symptoms helps. Depending on my energy levels and ability I’ll do an activity that I can do in that moment from writing to a friend to doing some sort of craft activity to just distracting myself by listening to a book.

Here are a variety of distraction activities you can do in bed - these activities vary in energy usage varying from low to higher level activities 

Pacing and activity management 

Pacing is really key to learn how not to overdo it which can intensify or increase or bring on pain. There are a lot of activity management tools and this previous blog post

Some tools include:

• The traffic light system
• Green: low energy activities 
• Orange: medium level energy activities 
• Red: high energy activities 
• 20:10
• 20 minutes of activity then 10 minutes of rest 
• Creating a daily schedule 
• Creating a good day and a bad day schedule and what each day will involve you doing in terms of types of green, orange and red activities, meals, to-do jobs, meals and snacks, resting etc.

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.

Disability services I use and would recommend

*All headers are links

Sunflower Lanyards

If you have a hidden disability it might be helpful to wear a Sunflower Lanyard to highlight to those around you that you have a hidden disability and therefore might require special assistance or adaptations to meet your needs. Many shops, airports, transport companies, hospitals and other venues and now trained to spot wearers of Sunflower Lanyards and meeting the needs of those with hidden disabilities.

I find wearing a Sunflower Lanyard helps to highlight that I have hidden disabilities beyond what is visible when I’m visibly sat in a wheelchair.

You can also buy cards to attach to your lanyard such as explainer cards about your hidden disability or cards for carers.

I’d also recommend buying Sunflower Lanyards directly from the official organisation as there are unfortunately fraudulent ones being sold elsewhere that look similar to the official Sunflower Lanyard.

Access Cards

Access Cards are a credit card sized card that identifies the wearer as well as outlining the wearers access needs. This could be difficulty queuing, needing one or more carers in with them, step free access, accessible toilet facilities, that the holder of the card has an assistance dog among other access requirements. The holder of this card can use this card when booking tickets so the venue are aware of the person’s needs in advance or they could use the card to obtain a free carers entry pass as the Access Card is a verified document of the holders needs.

I find my Access Card helps to better communicate my access needs as it’s clear and easy to understand what my access requirements are. They also provide me an easier and more discreet way to explain my access needs too as all I have to do is present my card. The cards you do have to buy and they are valid for a few years.

The main downside to Access Cards is that they’re only officially recognised at certain venues and other places so they can’t be used universally and generically to communicate and get your access needs met. I do hope in time that they are more widely accepted the more recognition they are given.

Radar Keys

Radar keys give the holder access to over 9,000 toilet facilities around the UK, these include disabled toilets and Changing Places. 

You are best buying official Radar keys as then they are most likely to work and be good quality.

CEA cards

For a small annual fee CEA Cards give the holder the admittance of a person into the cinema with them, this could be a carer or family member etc. to provide assistance to the card holder. Most but not all cinemas participate in the CEA Card scheme.

Though I don’t go to the cinema anymore when I used to be able to go to the cinema it was helpful to be able to take someone in with me in return knowing that they were also there to support me and care for me should I become unwell or need help.

Can’t Wait Card

This is just one of a few ‘Can’t wait cards’ that you can get for free. If you have a medical condition which means that you urgently need to use the toilet for whatever reason this card can help give you access to a toilet when shown.

I find my ‘Can’t wait’ card really helpful, at times it’s given me access to staff toilets when there’s been no toilets available to the public. It’s also allowed me to use the customer toilets in shops or cafés when I’ve not been a customer. It’s also allowed me to discretely explain why I can’t queue for the toilets or when I’ve needed to get past the queue to get to the disabled toilets/Changing Places.

Claiming my disabled identity

For Disability Pride Month I wanted to write about how I came to identify as disabled…

When I became chronically ill in 2012 I didn’t instantly see myself as “disabled”, I didn’t even initially see myself as chronically ill. I think this was maybe because at the time I initially hoped that my health situation would be temporary and I’d soon get well and regain my old life back, but over time as it sunk it that I was in it for the long haul I began to identify myself as “chronically ill”.

As the months and years went by on the word disability and disabled crept into my life more. For example I needed to use disabled toilets, I had a disability parking badge, I received disability benefits and and among other examples I sometimes had to refer to myself as disabled instead of chronically ill as it was more understandable to able-bodied people in certain situations. My health in public also became more public as I had to start using mobility aids too, from a walking stick to crutches to now an a wheelchair but I still sometimes wear a Sunflower Lanyard to highlight that I have invisible disabilities too beyond my access needs for my wheelchair. 

As time went on I also began to be more ‘dis-abled’ too - by the limits put upon me by my illnesses such as bad symptom days, by the barriers in society such as lack of accessibility in a building or by ableist attitudes and lots more things.

I slowly began to identify with the idea that maybe as well as being chronically ill I could also disabled too. More and more I felt more comfortable with the idea of being disabled and confident to present myself as a disabled person and being part of the disabled community. I didn’t know what the qualifications were to meet the criteria to be disabled but I felt within me that yes I was disabled too.

Under the UK Equality Act 2010 you are disabled “If you have a physical or mental impairment that has a ‘substantial’ and ’long-term’ negative effect on your ability to do normal daily activities.”

With the above two definitions yep I definitely do meet the definition of disability, but even if you do meet the criteria and would rather not identify as disabled that’s completely fine. Be who you feel comfortable being!

I now embrace being disabled and I’m happy to identify myself as disabled. feel proud to be part of the disabled community and I use my lived experience to help raise awareness: I have this blog, and also the opportunities I’ve done with Scope various M.E. charities plus some other random things.

Finding your identity isn’t easy; it was a bit of a grieving process when I accepted I was disabled as it felt almost a permanency to my chronic health conditions, like they were here to stay and this is who I am now. It was also joining a world of access issues especially now I’m a wheelchair user whenever I go out and the nightmare that can be and the exclusion so many people like myself and other disabled people face because the world isn’t designed for us especially when there are places that could so easily be made accessible if the venue wanted to. Or access issues with transport: taxis, buses, trains, planes even ambulances (yep in the UK a lot of NHS emergency ambulances don’t take wheelchairs on board!) Then there’s issues with work and getting assistance with work, disabled children getting the support they need in schools, lack of access in healthcare, the whole challenge with benefits and the stigma that some with that plus the paperwork and assessments, lack of disability representation and misrepresentation, ableism and so so so much more.

Disabled people are the largest minority any yet we are still fighting for equality and equity even in the most privileged of countries. 

It’s nice to feel part of something, especially during Disability Pride Month seeing different disabled people coming together to celebrate their disabled identity and share our pride in having disabilities of all forms breaking down stigma and showing what needs to change in society to make it a better place for disabled people.

Hopefully the more we celebrate Disability Pride Month the more attention it will get to everyone.