Tuesday 28 December 2021

FOMO - Feeling of Missing Out

I don't use the term 'Fear Of Missing Out' because there're isn't any fear that I may miss out; I know that I'm missing out hence the feeling of missing out.

Having chronic health problems, especially having severe M.E I often feel like I'm missing out. This could be missing out from not having being able to graduate from University, or feeling like I'm missing out on what I see people I know are up to from what they share on Instagram or missing out on family occasions or that I missing out on the life that I should be living if I hadn't have become unwell. I feel like I'm missing out on so many things: education, employment, socialising with friends, family get togethers, holidays, going places and so much more.

I've never gotten over the Feeling Of Missing Out and it makes me feeling like my ill health is winning over on me and that it's taken so much away from me. Rather than feeling angry like some people may feel for me I feel more a sense of deep seated sadness for the life I should be living if I hadn't of gotten ill.

During the Christmas holidays especially for myself and many others it feels a time of feeling like we've missed out. There ar times when I've had to miss out on events; some of which I would have loved to be part of but I know it wouldn't have been possible for me to join and it would have tipped my fine balancing of energy levels and other symptoms. I had to prioritise so carefully what I could and couldn't do and how much I could do. 

That feeling of missing out makes me feel at times invisible as I'm not there, instead I'm alone in my room. Coincidentally the international campaign on World M.E Awareness Day is called the 'Millions Missing' - the millions of people world wide missing from employment, education, society etc due to their M.E, especially those with severe and very severe M.E.

I don't think I'll ever get over the 'Feeling Of Missing Out'. I always wish I could enjoy things and equally not feel the payback and exacerbation of symptoms when I do join in with something. However I feel like I've come to accept those feelings of missing out and times and events that I do want to join in with, even briefly, I've found ways to do so. I plan lots of rest beforehand, I ensure that I manage my energy whilst joining in and listen to my body when it starts to tell me that it's had enough or needs a break and I ensure that there plenty of time to recover after.

I've also come in a way to accept my limitations and that feeling of missing out. I know that I can't do everything so instead of dwelling on what I can't do and what I'm missing out on I look at what I can do. This has taken me some time to do and there are times still when I do feel sad about certain things I'm missing out on. Life with chronic illnesses isn't a linear; there are times when I feel okay and times when I don't feel okay including that feeling of missing out. Sometimes seeing a post on Instagram or something on YouTube or hearing what a friend has been up though I'm happy for my friends inside I wish I had the ability to do things and then that makes me feel like I'm missing out on things I'd love to be able to do. But this is where acceptance comes in and also focussing and feeling gratitude for what I am able to do within my restrictions and the feeling of what I can do rather than the feeling of what I can't do and what I'm missing out of.

Text reading There are things that are possible; things that are impossible, but otherwise I think within my limitations anything is possible.

Tuesday 21 December 2021

Christmas with a chronic illness plus some tips

A green crochet Christmas tree with a brown stump at the bottom there is a button star at the top of the tree and it is decorated with differently coloured small pom-poms
Christmas is a lovely time of year. I love spending more time with my Dad who is off work as he's a teacher and I enjoy seeing my family. I love the kindness of my friends sending me cards and gifts and I enjoy making cards and gifts and sending them out in return.

However, this time of year can be difficult. I can't speak for all chronic illnesses only mine and how they affect me. I find Christmas affects different aspects of my illnesses. My limited energy means everything takes a lot longer to do and as I type this I still have a load of wrapping to do. Making, writing and sending out Christmas cards and gifts took me at least 6 weeks to do - I don't normally do Christmas cards but it was something I wanted to make an effort doing this year. I also have to plan a lot of things, things I want/need to do and how I will do them such as breaking up the task, ensuring I follow my daily plan and have regular rest periods, have restful days before Christmas Day to enjoy the day and then plan Christmas Day itself and then ensure I can rest and recover after Christmas Day so that I'm able to visit family which I really want to do as I haven't seen my cousins in quite a long time. 

There are also events that I have to decide to sit out of as it will be too much for me. I find my hypersensitivity is affected so having family round downstairs (which I'm sitting out of and laying in bed resting instead) and the noise from downstairs is too much so I put in my noise cancelling ear plugs and also my noise cancelling headphones. As well flashing fairy lights affect my hypersensitivity to light. I also find the cold makes my pain and muscle spasms worse.

Despite all this I set myself to focus on the enjoyment of Christmas and when you have a chronic illness or disability you do just learn to live with and adapt. Christmas just poses extra challenges compared to rest of the year.


Some of my tips for managing the holidays with a chronic illness or disability

A paper bag with the word prescription on it and the green pharmacy logo
(As I said above, I can't speak for all chronic illnesses but hopefully you may be able to relate to some of what I've written and also some of what I'm going to write about below.)

Ensure you have enough medication to keep you going!

Plan, plan, plan! List all you want to do, from doing some baking through to Christmas Day events

Use your activity management skills; don't do more than you're able to and listen to your body. If it's telling you that it's tired, in pain or flaring up etc stop and take a break and rest.

Pace yourself. Break tasks down such as Christmas card writing or wrapping gifts.

Though you can feel like your missing out your body isn't Superman and you may need to sit out of some things so you are able to enjoy the things you do take part in.

Tuesday 14 December 2021

Low Level Activities

When you have a limited supply of energy it can be difficult at times because you want something to do to occupy yourself but you may lack physical or cognitive energy to do certain activities. I find myself in tis situation a lot as well as building low level activities into my daily plan so I'm doing more restful low level activities alongside actives that take up more of my energy.

So here are some low level activities I find help to fill my day.


Audiobooks

I find reading a little more challenging as it requires more concentration so audiobooks have opened up a whole new world to me and made me fall in love with books again. There is a lot of audiobooks out there in a wide range of genres and I find it really enjoyable to lay in bed listening to a book.

If you struggle to access books because of you're disability you may be consider to have a 'print disability' alongside those who are blind and visually impaired. This may give you access to the RNIB Library and Calibre audiobook library though an app called Easy Reader. This is how I get my audiobooks and it's great that I can access audiobooks for free. Alternatively there are lots of different audiobook subscription services out there now with more people wanting to access audiobooks. 


Reading

A black woman laid on a sofa reading a book
If books are accessible to you this is another low level activity and depending on your ability you could just put 10 minutes aside to read. I find trying to get a variety of different activities in my day helps me as my mind and body aren't overdoing in on one type of activity. But if you love books you can spend as much time as you wish reading.

Some areas may offer a home library service and volunteers can find the sort of books you like and bring them to your home for you if you are not able to visit the library yourself and this can help bring down the cost of buying books as well as finding room for your books.


Podcasts

Podcasts I quite enjoy listening to as I find them so informative and I like the wide variety of podcasts that are out there. There is such a wide variety of podcasts out there on a wide verity of genres, for documentaries, educational, mini fiction series, current affairs and chatty style podcasts and everything in between! There really is a podcast for everyone.

I get my podcasts from BBC Sounds and Apple Podcasts and currently I'm subscribed to Audible so there's podcasts on there too.


An adults hand colouring an image
Colouring

Colouring is a good low key energy as you can break the activity down and just spend small amounts of time and finish the image bit-by-it. There's also such a wide range of colouring books out there; some with more complex images than others. You can also get colour-in stickers or postcards.


Activity books

There's a wide range of activity books out there from word search books, criss cross, sudoko to more creative activity books like sticker-by-numbers. Like colouring you can break the activity down and just do one word search puzzle or part of a sticker-by-numbers image. 


A man's hand wearing a long sleeve striped top working on a jigsaw puzzle on a wooden table top
Jigsaw puzzles

If you're able to jigsaw puzzles are a great low level activity and like with some of the other activities mentioned above you can slowly work on jigsaw puzzles until it is completed. You can also get a range of difficulties from 100 piece jigsaw puzzle to ones with 1,000 pieces.

I'd recommend to start small and to work your way up. If you find you enjoy jigsaw puzzles it might be worth getting a puzzle board so you can store the jigsaw puzzle you're in the middle of working on.


Pinterest

I would personally consider Pinterest a low level activity. You can build boards on different topics based on your interests. One activity I'd defiantly recommend doing on Pinterest is building your dream home with no limitations or restrictions. As a suggestion you can create your 'Dream Home' board and have a section for each room of your dream home and you can spend ages designing all the things you'd love to have.

Tuesday 7 December 2021

Book review: 'The Secret Midwife'

Image of a book cover. The background is of a caucasian woman in scrubs with her hair up. Text reads 'The Secret Midwife: Life, death and the truth about birth'.

Rating: ⭐️⭐️⭐️⭐️

I thoroughly loved this book and it was something different to my usual genre of book and I'm intrigued to listen to more memoir/confessional books.

The book is written by a midwife who remained anonymous and she shared in her book in a chronological fashion. At 17 she didn't know where to take her life and then went on a midwifery taster course and loved it and she knew then that that was her vocation. At 17 she started her 3 year midwifery diploma. She took the reader through her training as a midwife until she qualified and proudly put on her blue dress for her first shift as a qualified midwife. 

The book followed the highs and lows of her career and she went into such detail including the medical aspects and I learnt so much about the role midwives play and all the complications that can happen. As well as that she also shared her person life; how she broke off a long term relationship and then found her husband and their relationship and life together, her miscarriage of her first baby and then the birth of her daughter. 

In the book she also shared the changes of her role as an NHS worker as the years passed by. The way management changed, new protocols and changes to NICE guidelines and work practices. As well as this she also spoke of how it was like to work for the NHS and the strain on resources, lack of support in certain areas such as giving evidence in court and chronic staff shortages. In the book the author shared how this ultimately lead her to having a mental breakdown and having time off work due to anxiety and depression.

Each book touched on different topics and themes of the job such as her midwifery training, baby loss, mental health in motherhood, babies born in corridors and in toilets, Dad's delivering their baby as there was no time to get to the hospital, birthing complications, surrogate women, different cultures and how this affects the delivery of a baby among many other things.

It was a totally different book to the ones I've been listening to for quite a while now and I throughly loved this book and I've already sought out similar books. I learnt a lot about the role a midwife, what they do and so much more. That whole side of healthcare I'd never given much thought to and I now admire the complex role midwives play within the NHS. 

As I listened to the book I followed the highs and lows of the different men and women the author featured in the book. There where funny moments and more somber elements. It's a book I would defiantly recommend. 

Tuesday 30 November 2021

5 Money saving tips

I'll be the first to admit that I used to be rubbish with money like many people but now I feel like I'm fairly savvy when it comes to money and here are some of the things that I find helps me to save money as well as spend more wisely.


1. Use an app for monitoring your money

I personally use an app called Pocket Expense for keeping an eye on my money and I've found it really helpful. Before I used a spreadsheet that I created myself and there I'd put what I'd spend where or what income I had coming in such as my PIP disability allowance or a refund. This app now does the same thing but it's a lot easier and I like to colour code everything so have thins on the app and the icons for different spending categories such as a purple telephone icon for my monthly mobile expense. I'm sure however that there are many other similar apps out there for you to use too.

Other recommended apps can be found here.


2. Set a no-spend goal

To help me save money I put myself on a no spending goal on purchasing craft things and stationary (except the obvious essentials like glue). I did this as I already had plenty of craft supplies and stationary and I didn't need more so I set myself a goal to use up what I already had to try and save money. I've been on this ban for a while an I still have a lot of craft and stationary supplies (so I think I'll be on this no spend goal for a while). Plus also doing this has helped me to feel good about how much money I have been saving and showing myself my resilience to not buy anything new and using up what I have.

Maybe you could do something like cutting down on buying something like take-out coffee, sweet treats, alcohol, eating out or take aways? Think where you spend your money and how you may cut back such as making coffee at home and putting it in a thermal mug to take out or making your lunch at home rather than buying it etc?

Apps like the one I talked about above can help you work out where your money goes so you can see places where you can implement a no-spending goal.


3. Stick to a budget

Sticking to a budget can also help you save money. It might be something like how much you spend on your weekly food shop, when you go shopping for clothes or at theis time of year how much you spend on Christmas gifts.

With the latter I made a list of all the people I'm sending gifts to and then I set a budget on how much I was going spend on each person. I also put some money aside earlier in the year to hep me with my Christmas budget.

When you stick to a budget is can help bring a sense of achievement as the money you've saved you can put aside for something else to to put into your savings.


4. Be savvy with shop membership offer and deals

Joining up with shop membership scheme or advantage cards or other similar scheme can bring a lot of benefits. You can get discounts or you can earn points as you shop which may hold monetary value or you may get special member discounts or offers.

With my memberships I'm always looking at what offers they have for me and some places target you with certain deals based on your past shopping history. 

I think my biggest success has been with a particular store which I shop from a lot for toiletries and makeup and gifts. For each pound (£ GBP) I spend I get 4 points (4p) but if I look out for deals I might get triple points or an extra 200 points if I spend a certain amount or 150 extra points on selected brands or 3 for 2 deals etc.  With this store I save up what I need to buy and look out for their offers and then I do a big shop so I claim the additional 200 or 500 points or free products or on a couple of occasions a free mystery box worth £30.

The points I saved with this membership has really helped me with my Christmas budget as the money I had on my account I was able to use on Christmas gifts (and to treat myself too).


5. Open a savings account

Savings accounts accounts with banks can help you save money. You might want to do something like transfer a little money aside each month from your current account each month to help it grow or just save up and transfer a little aside when you have a little spare amount.

You can search around online for which banks have the highest interest rate on saving accounts or offers for opening a new account. A couple of good comparison websites are Money Saving Expert and Money Supermarket.

An alternative to a bank savings accounts are stocks and shares savings accounts. The interest rate on these accounts are much higher than what banks can offer and though they depend on the stocks and shares market it is something that I would say is something to defiantly look into if it is something you are able to commit to [more than a bank's savings account]. On company I can personally recommend is Foresters.

Tuesday 16 November 2021

Mental health & disability

Recently I decided that I needed to address mental health more here on my blog. It's something I've shied away from possibly because I've had experiences where my illnesses where not fully understood and where mistaken for being psychosomatic or that I'd over reacted turning a twinged hip into one that has dislocated. (Note: having hypermobile Ehlers-Danlos my joints do dislocate a heck of a lot ore easily, so no I don't have to be in a car crash for my hip to dislocate). In all honesty when healthcare professionals think I'm 'making it all up' it's really upsetting and I don't feel like my very real and very physical illnesses are believed and are poorly understood and at time it's makes me question myself. Having rare illnesses or poorly understood diagnosis's is often really hard. I know the medicalisation of my life and my life with the conditions I have often better than most doctors, especially when you live in a small town. Sometimes talking in medical terms makes professionals think that I've been on WebMD instead of living with chronic health problems and because my illnesses are poorly understood I've often not been given the care I  need; this is especially the case in A&E.

What staff can do is listen to me and let me use my expertise by experience and learn that a 28 year old may need help with certain tasks most people my age can do for themselves. Also just ask me what would help me the most like turning the lights off in the room and keeping the noise level to a minimum and ensure I am comfortable and have the tools to communicate to name a few things. Also along with that with the new NICE guidelines I hope that staff will follow the new guidance for the care patients with severe M.E may require as I find out of all my illnesses the hospital environment flares my M.E up the most.

Now, back to mental health. My struggle with my mental health precedes becoming chronically ill and now my depression and anxiety are exacerbated by my chronic health problems and disabilities. 

Being chronically ill/disabled is pretty much a full-time job. All the time without a break you are dealing with symptoms, bad days, medication times, appointments, chasing up professionals, sending letters and emails, making phone calls, ordering medication and other medical supplies, endless waiting for so many things - the list goes on. There is so much more to having chronic health problems and disabilities than meets the eye.

For many people as well as their physical health it deeply takes a toll on their mental health unsurprisingly. 

Everyone has mental health and it's important that we look after our mental wellbeing as much as we do for our physical wellbeing.

Since becoming ill I've found a gap when it comes to mental wellbeing. When I developed depression and anorexia as a teenager I was able to access psychotherapy and other care. However when I became chronically ill there was and is little emotional support to help me deal with being chronically ill and little of it has come from the NHS and never from mental health services.

I became ill in 2013 and was officially diagnosed in 2017 with FND and M.E - my other diagnosis': hypermobile Ehlers-Danlos Syndrome, PoTS and a few others all collectively being my 'main' conditions followed shortly after when I was referred onto other consultants. Even after then after being given  name to my illnesses there wasn't a massive shift in the help I was receiving physically let alone for my mental wellbeing. It wasn't until 2019 when I when into a specialist ward for my FND and the severity of my M.E that I received some sessions wth a health psychologist. In these precious sessions it was the first time I was able to talk about and work on how my health was affecting me.

There is health psychology services, there's even one at our local hospital. The specialist ward I was on tried to refer me as part of my after-care following discharge but the service only accepted those with certain diagnosis' and non of mine where on their list. Plan B was for a psychologist from our local mental health services to see me with support from the hospital's head health psychologist, who from what I was told was interested in 'my case' (gosh I hate that term, I just feel like my oversized hospital file as opposed to a real person with whatever is in said oversized file). That Plan B never came to fruition. It felt like my mental wellbeing wasn't important to them. I also felt that the support was denied from both health psychology and mental health services because I didn't fit into a nice neat tick box - I didn't have the right physical ailment and neither did I have a sufficient enough mental health diagnosis (despite my diagnosis of clinical depression).

However, positively, upon discharge in my after-care plan I was also referred to a Social Prescribing service and they where able to refer me to a counselling service which they had a pot of money for. Reflecting on this this has been the better option. 

Counselling isn't for everyone but for me medication alone doesn't work alone. Now I've been seeing a therapist (and there's no shame or weakness in seeing a therapist or indeed taking medication for your mental health) it's really helped. It's helpful to have someone from the outside who's just there to listen, support me and help me see things in a different way (and how it's all confidential too). I can talk about how down I get when I'm stuck in one room, or how out of control I feel or how I get 'sick and tired of being sick and tired' or how I wish I could quite my disabled full-time job and also the ability to grief for a life that's been turned upside down.

I think there's a lot of awareness around how our mental wellbeing can be affected by lots of things - job loss, family breakdowns, bereavement, being a victim (or more-so a survivor) of crime etc. However I don't think that many people attribute chronic illness and disability to poor mental wellbeing and I think more needs to be done about this. For example more health psychology services and them accepting a wider range of illness to be directed to their service. I also think that GP's, consultants, nurse specialists etc need to become more aware of how someone with a chronic illness or disability may as a result of their health may be struggling with their mental wellbeing. I know within the new NICE guidelines for M.E that CBT - Cognitive Behavioural Therapy - is now recommended as a support tool but the problem with that is that for some, like myself, CBT isn't the right sort of therapy for everyone and other types of therapy may be more effective.

I'm so grateful to have access to therapy as I know for some it isn't something they are able to access. I think mental health and wellbeing within chronic illness and disability also needs to be talked about more and considered.

Lastly I just want to say to those who are chronically ill or disabled that it's okay to not feel okay; we're allowed to be upset, depressed, bereaved, angry, frustrated, fed up and every other emotion named and un-named. Also don't feel afraid to talk about how you are feeling emotionally - your mental wellbeing is just as important as your physical wellbeing; speak with your GP or your consultant or your social worker as they may be able to help. Also talk to family or friends or even a helpline. As good as it is to talk to my therapist I find it good to talk to my friends who also have chronic health problems as they 'get it'. 

Also importantly and I can speak from personal experience on this point is to live outside the bubble of your health problems. My friend once shared this quote "your life is like a piece of cake and you have ten portions, but only one portion is your health". It is so important for your mental wellbeing to yes deal with your health problems but to not have them as the central sole of your life and existence. When I realised this and started to focus on all ten portions of who I am it massively has helped my mental wellbeing.


Text reading your life has ten portions but only one portion is your health Ruth. A box with text reading me with an arrow pointing to a circle. Another box with text reading my health with another arrow pointing to a smaller circle within the larger circle.

Tuesday 9 November 2021

My new normal? Plus new M.E NICE guidelines

With my health conditions especially my M.E and FND I go through dips, sometimes lasting a few days, a few weeks or even a few months before slowly returning back to my old 'normal'. Often however when I'm having a long dip I begin to wonder if this is my new normal. Basically when you have a chronic illness you have you baseline 'normal' - what level of being ill is normal for you and then within that you generally have your good and bad days centred around your baseline and then you go through dips. For some people they can experience a period where they improve but unfortunately I've never experienced this.

Recently I've not been too great especially with my M.E and I've been struggling more. My M.E is classed as severe and has been so for several years now. At first I was just not feeling my best and then I developed a chest infection. As for my my M.E is experienced more as a neuro-immune illness I am more prone to infections and it takes me a while to recover from them. So I just put the exacerbation in my low energy levels and feeling generally unwell and other symptoms down to my body firstly feeling rubbish from both the infection and the antibiotics and then finding it hard to get over my infection. But as time goes on you start to wonder if this worsening of my M.E is my new normal. Alongside that now having a profiling hospital bed at home feels another step into my illness and though having this bed is much better for me and is helping me it's like another confirmation of the severity of my ill health.

For me I've started to wonder this and you begin yet another cycle of grief for yet more loss of your health. I'm grateful that at present I'm having counselling and can talk to my therapist as well as having some really good friends that I can turn to.

 

Revised M.E/CFS NICE guidelines

I don't want to say too much as I haven't yet been able to fully read the new NICE guidelines. NICE guidelines in the UK are basically instructs professionals on how best to deal with and treat [most] illnesses.

For a long time the NICE guidelines for M.E/CFS (Chronic Fatigue Syndrome) have been pretty poor, lacking, not fit for purpose and for many people with M.E/CFS harmful. The old guidelines as treatments for M.E/CFS have stated that two main treatments to be given are CBT - Cognitive Behavioural Therapy and GET - Graded Exercise Therapy. 

In regards to CBT it mainly made out that the basis of M.E/CFS was psychological as opposed to being a neurological/neuro-immune illness. Then when GET was prescribed to patients for many it did more harm than good. The PACE trial was an absolute disaster and very misleading on how CBT and GET was truly affecting patient and when the true figures for how CBT and GET affected patients it proved just how harmful CBT and especially GET was for people with M.E/CFS. Yes for some people CBT and/or GET did prove helpful but for the vast majority of patients the way M.E/CFS was seen and treated needed to be changed.

I now this from personal experience. There are many different forms of psychological therapy and for me psychologically CBT isn't the right type of therapy for me. Then when I was prescribed GET it was just impossible and made my M.E worse and my body just shut down even more.

In a poll by the M.E Association when people where asked if the agreed of disagreed with the erasion of GET from the new NICE guidelines 100% of people who filled in the poll agreed with GET being removed - link here to the poll results.

   

The new guidelines

The new NICE guideline for M.E/CFS took three years in the making and the launch was put off as more consultation and investigation was felt needed but now (yay!) they have been published.

GET has been totally erased as a treatment and CBT is now seen as a support tool to help patients cope with the emotional effects of their illnesses rather than it being a treatment to 'improve' M.E/CFS. The new guidelines also have a dedication section for patients with severe and very severe M.E/CFS (which I have read) and some of the recommendations on how to support those patients I felt was very positive and I hope they will go on to help my own care and support needs. For example the new NICE guidelines state that home or virtual visits are recommended and I know from the years of having severe M.E how challenging it has been at times to get care at home. Other little suggestions I liked sure as ensuring that a private room is offered to patients and that the environment is kept quiet and lights are dimmed and personal care is best being given by those that know the patient well who are familiar with the individual's needs.

A link to the new NICE guideline for M.E/CFS can be found here: https://www.nice.org.uk/guidance/NG206

Tuesday 2 November 2021

It's okay to use a mobility aid

Recently I've come to realise that some young people/young adults with chronic illnesses and disabilities feel afraid in using mobility aids. I watch a fair bit of YouTube and one content creator made a mini series looking for either a mobility scooter or electric wheelchair and in the videos she was afraid of the aesthetic and clinical look of these mobility aids. Then another YouTube content creator has shared her story about her anxieties initially around starting to use a walking stick and then a wheelchair and then in the comments of her videos others shared their anxieties around using mobility aids also.

I think there's a long standing stigma around disability for young chronically ill and disabled people as aids especially I've found are often associated with the elderly. All around us in society and on the media we see older people using walking sticks for example. I've also found that when going through catalogs and looking on websites that sell aids nearly all the time the models used are older people. It even makes me second guess if I need a particular product when their targeting the user of such as thing at someone much much older than myself. This creates a lot stigma around mobilities aids and other aid products that these products are just there to be used by the elderly.

When you have an acquired chronic illnesses your life slowly turns upside down and what it once was pre-illness is no longer there and it's a huge adjustment; I know this from my own personal experience.

For some people their illness can affect their mobility; they may struggle with the functioning of their legs or walking may exacerbate symptoms such as pain and fatigue. This is where mobility aids - walking sticks, crutches, collators, wheelchairs etc can be a massive help and in the name mobility aid. But there's a lot of stigma around mobility aids and some young people feel put off from using mobility for fear of being questioned or judged for example (this has come from what I have seen and read on YouTube in videos and in the comments section).

Close up photo of a pair of crutches part of the upper black plastic component of the crutches is visible and then the main stick component is shown and the design on this is a colourful floral print
The floral design on my crutches
I've been using mobility aids for years now. Initially I had a fold-up walk-in stick for when needed to then using my walking stick all the time. I then progressed to using crutches and now I use a combination of either my crutches or my wheelchair. I hated my grey NHS crutches - they where so clinical, uncomfortable and they just didn't feel right and I didn't feel like myself and I felt like they made my disability more obvious and people often assumed or asked me things like had I broken my legs or what was wrong with my legs. 

When I got my purple spotty crutches I felt more me and they where more of a permanent fixture in my life and to my mobility rather than a 6 week use of NHS crutches for a broken legs or ankle sprain. (My walking stick before these crutches where a floral print.) I feel that having a mobility aids with a design on them helps me in a way as they express who I am and my style as opposed to glaringly obvious NHS grey crutches identifying my use of them. Especially as my use of crutches is that is permanent - anyway that's just how I feel about my crutches (and the accessories I use on my wheelchair).

Another point I feel that needs putting in this post is the portrayal of disability in the media. Occasionally you see the odd main character in a wheelchair but to my knowledge no one young in the 20's and 30's age range. When it comes to crutches and walking sticks you see even less and the only main character that I can think of is Hugh Laurie who plays Gregory House in House M.D. (there's maybe more out there).

Tuesday 26 October 2021

Audiobook pro's and con's

A tanned woman with dark hair wearing a white top she is holding a white mug and is wearing white headphones

Some people prefer the tangible feel of a book but now audiobooks are becoming more popular and now with greater availability of audiobooks more people are preferring to listen to books instead.

For some people audiobooks are a preference but for some it's more a matter of accessibility and with more audiobooks being available this is a positive.

Personally audiobooks for me are more a case of accessibility though I am trying to get back into reading. I have dyslexia and Scotopic Sensitivity (aka Irlens Syndrome) so I find text on a white page hard to read. I also find it hard to concentrate and find written text hard to process so for me I do find audiobooks much easier compared to reading though I do miss reading.


Audiobook pro's and cons

Pro's

As I mentioned audiobooks are more accessible especially to those with visual impairments or have difficulty with written text.

Audiobooks are more portable as you can download them onto places like your phone. I know for me I find this helpful for when I'm travelling or in hospital.

I find just like with books you can get lost in listening to an audiobook and with audiobooks when you're listing to them through headphones you can shut out more from what's going on around you.

Audiobooks can be very relaxing and I find them a great low-key activity.

You don't have to find storage space for all your books (though I do love the look of  rainbow stacked book shelves).


Con's

Not all books come in an audio format.

Sometimes the narration or the voice of the person reading of the book isn't that good and sometimes I find that can spoil the imagination of the book or it can be off-putting.

Cost, when I first started to access audiobooks to buy the CD's they where quite expensive and now cost wise it's the cost of audiobook subscription services


For those who are blind, partially sighted or have a print disability*

RNIB and Calibre do have a free audiobook library - RNIB link here, Calibre link here).

*Print disability may include conditions such as dyslexia, Irlens Syndrome/Scotopic Sensitivity or other conditions which makes reading text difficult such as M.E/CFS, MS, or a brain injury as a few examples.

Tuesday 12 October 2021

Reducing your screen time & online wellbeing

Blurred image of a woman who is olive skinned and has blonde hair and is wearing pink lipstick and a striped top the photographed is focussed on the mobile phone in her hands
Your phone can be a great thing and these days you can do so much with your phone and tablet and for some people they spend most of their day looking at their phone or tablet but is this healthy? I also recently watch a Channel 4 Dispatches on the environmental impact of our online lives (link here).

Personally I can say for sure that I'm not addicted to my phone or social media. I can go for days without checking in on Instagram and I can put my phone down and leave it (and then forget where I put it!). So I would say that I'm quite good with controlling my use of my phone and iPad and even my Apple Watch despite it being there on my wrist most of the time.

I'm not an expert but these are just some of my tips to reducing your screen time and having a better relationship with technology.


Be mindful when scrolling

This can occur with any app but mainly when using social media apps. Notice when you're spending too long on a particular app or if you're just mindless scrolling out of habit rather than with purpose. Try to set an intention when you go on an app especially social media; this may be to share a post, message a friend or check out a couple of friends profiles and leave it at that. Also be mindful of what you post and think before you click for example "do I really need to share this photo or share this comment?" Also remember that what we see online is just the tip of an iceberg and we don't fully see what is going on i other people's lives; it's a bit like the news where we only see or read what is being reported.


Set up your screen time settings

Photograph of a phone screen with a graph displaying screen time usage
One of the things I've found really helpful for me is setting limits on certain apps and setting up my screen time and down time settings (this may vary depending on what type of smart phone you have.

First of on certain apps I've set a limit on how long I can spend on that app each day, so for example with Instagram and Twitter I limit myself to 1 hour a day. Usually I don't spend as much time as that on Instagram but when I do it helps to reduce how long I'm on my phone for.

Also on my phone I have screen down time setting so between 8.30pm and 8.30am the vast majority of my apps I can't access and I've just limited myself to essential apps only during this time. I've also done a similar thing with my contacts so during my down time I can only contact or receive texts and phone calls from certain people.

Doing this especially helps with my sleep as I'm not getting disturbed when I'm trying to sleep or I'm not tempted to scroll through Pinterest when I should be settling down for bed.


Take a break from social media

Another thing you could do is take a break from social media by temporarily turning your account off and/or deleting the app from your phone or tablet. Sometimes taking a break can be quite liberating, even if it's just for a week and it will give you more time to engage in other things. This might also be good for your mental health as so often we are wrapped in in reading and seeing photo's of other people's lives that we forget about our own lives or we spend ages trying to take that "perfect photo" to share online that it becomes mentally unhealthy.

If you do take a break from social media try to set some goals for your own wellbeing like taking up a new hobby or start engaging in mindfulness meditation or meet up with a friend for coffee rather than virtually socialising online.


Revise who you follow and what groups you're in

Look at what groups you are in online and think about whether you still want or need to be part of that group or look at who you follow and think more about what you want to get out of social media. Think "is being part of this group or following this person good for me?" and often quality is better than quantity. Personally I think it's better to be part of fewer groups and follower fewer people is better and then you can get more out of the groups you are part of and the people you follow.

For me revising what groups I was in and every-so-often revising who I follow has been really helpful. When I first became unwell I joined a lot of chronic illness groups and followed others with chronic illnesses and for a while it was good to be surrounded by others who understood what I was going through. Over time however I started to find these groups a little toxic; some members would be in competition to be 'the most ill', or have the most diagnosis' or be on the most medications or people would unhelpfully compare medications and symptoms and illnesses. I began to realise that these "support groups" weren't supportive at all and leaving them and Facebook was the best online thing I've done. I now just stick personally to Instagram mainly and even there I've revised who follow. Yes I do follow others who are chronically ill, some of whom I've become friends with but I try to follow accounts where there is a healthy balance. For me I choose not to follow people who solely post health related content; for me I'm not interested in photos of pulse oximeters or a bag of saline on a drip stand etc. Again I find with these types of accounts I find some people want to be 'the most ill' - like I one had a friend request (which I declined) and I remember on their bio in bold capital letters they'd put 'seriously chronically ill'. For some they may wish to follow these accounts and that's fine and for some they may want to share about their illness but being chronically ill or disabled isn't a competition and it can be quite unhealthy. There's a documentary about the chronic illness community and I know it's had a lot of controversy but I found it insightful to watch and I did find it relatable in some ways (link here). 


Photograph of an iPhone with the phone's switch off option on the screen
Switch your phone off or leave it in another room

If you're able to, maybe for an hour a day switch off your phone or put it away and engage in something else, maybe read a book, do some crafting, write s letter to a friend or enjoy being outdoors - anything that doesn't involve screens and technology.

Tuesday 5 October 2021

How I blog as a chronically ill blogger

patterned border around a photograph of a bullet journal page headed with the title blog post ideas with below a list of hand written notes
Blogging when you have chronic health problems and disabilities can be a little tricky at times but it can be possible to do and I love blogging (hence why I'm still going with this blog three years on!) - the main thing is to be organised and plan!

My secret to posting weekly is that I have a whole bunch of pre-typed blog posts that I auto schedule to post and often I'm months ahead of myself which is so helpful as if I didn't do this with the unpredictable nature of my health I could and have gone through periods where I haven't been able to type any blog posts for a few weeks, so knowing that I have everything lined up is very reassuring.

I like to blog on a variety of topics; not just disability content as after all my health is only one portion of who I am and there's lots of other things about me that I like to share with you. To ensure I get variety in my blog posts and to try and get some balance between health and non-health posts when I have my pre-typed finished posts I mix around the topic areas on the auto-scheduling. (My blog may look neat and tidy but behind the scenes it's much more chaotic with finished and draft posts; thankfully I can tidy it up and view draft posts or scheduled posts etc).

navy patterned border around a photograph of a bullet journal page the title on the page is hand lettered and colourful and reads post it not planning and there is a pale yellow post it note with some hand written notes on

To help me write posts I've started a bullet journal where I keep blog post topic ideas (and those for my YouTube channel). I've found since doing this it's really helpful as I (a) don't have the draft loads of post ideas with just a title as the title is in my bullet journal and (b) I can plan in my bullet journal with key points I want to include in my blog post as well as research as where possible I like to include quotes, research, organisations or helplines for readers to go to if they wish to find out more or want to contact a helpline.

Then as well as the posts themselves is having an easily designed blog. The Blogger theme layout on my blog I feel works really well for me. It has changed over time though since I got and illustrator to design my header I've kept the main design of my blog the same. Then there is the side bar, again this has seen a few changes, mostly as I work out what items work best where and also as I discover how to do new things. You may also notice that I have an accessibility widget with features to change the accessibility of my blog such as changing the font and it's size or adding a reading ruler. I like to be as accessible as I can and I'm the same with my YouTube videos where I always include subtitles and CC.

So, my main points for people with a chronic illness/disability who would love to start blogging are:

 Have a notebook or bullet journal or something similar to note down ideas for blog post titles, points on what you want to include your blog post - this could be a list or spider diagram, whatever works best for you. (I also find colour coding helpful.) Also include research in your notes such as links to articles or organisations for example that link to your blog post. I also find planning helpful with my dyslexia.

 Post in advance - rather than writing week-by-week write your post here and there is you're not able to write a whole post in one go and then once the post is finished schedule it to auto post. This is how I create blog posts and I bank up posts to the point where I'm more-or-less able to share posts on a weekly basis.

 If you want to post for a particular event do the same above, sometimes I've written awareness event posts months in advance.
Work out what you want your blog to be about - a disability blog, a fashion and beauty blog, a journal blog , a recipe blog or a blog about all aspects of who you are and what interests you.

 Find a blogging platform that is best for you, I have no affiliation with Blogger but I've just found that it's the best one for me. A while back I did switch over to WordPress but I struggled to navigate it so I came back to Blogger, but for you WordPress or other platforms may work for you.

 Don't buy a domain straight away - wait and see how much you get on with blogging before you purchase your own website domain and maybe even longer to attach an email to your blog.

 Have a design layout of your blog that works for you. I find that keeping is simple is best and let your posts do all that talking.

 Also be aware of accessibility, this could be the colour scheme or font you're using. Places like UserWay offer a free accessibility widget (this is what I have on my blog). Also ad alt text or image descriptions to images.

 A lot of putting together my blog from post ideas to how to set-up certain things like social media links or 'how to do ...' comes from searching on Google and YouTube.

Don't put pressure on yourself. Blogging has to be something that you enjoy doing; you don't have to blog regularly or always write long detailed posts.

Tuesday 28 September 2021

Living with chronic pain - Pain Awareness Month

I've lived with being in pain for so long now that for me being in pain is normal and I've forgotten what it feels like to not be in pain. Pain as a symptom is a key component in all of my physical chronic illnesses. I experience many different types of pain including joint pain, neuropathic/nerve pain, muscle pain, headaches and migraines, bladder pain and gastrointestinal pain. Then there are different types of pain that I feel - a dull ache, spasms, cramps, tingling pins and needles, a sharp stabbing sensation, griping, throbbing, and crushing, head pain during a migraine to name a few. Sometimes my pain is just there in the background other times it can be an acute onset of pain for example due to a joint dislocating.

One of the big problems when it comes to pain is the with my neurological disorder, FND, as it is a result of the nervous system not working and a fault with the brain's messaging system in my brain the signals for pain remain switched on to the max even when there may not be a reason for me to be in such high levels of pain. I then experience a wide range of chronic and acute pain on a constant basis for all sorts of reasons as pain is one of the key symptoms that come with my different illnesses which doesn't help the the mixed up pain signals that comes with my FND. This means that I really have to be on-it with managing my pain utilising skills such as distraction, mindfulness, using my hot water bottle/heat pad, my acupuncture pen, TENS machine etc. I always try and use pain relief medication as my last option and then I will slowly step-up what I take, the only exception is in the case of severe acute pain where I need to take some sort of pain relief immediately.

Living with chronic pain can be hard especially on my bad days as I'm wanting to distract myself from the pain but I'm unable to do so. As well as that often when I've over done it or 'done a big thing' this will trigger my PEM/PENE* which will flare-up my pain along with my other symptoms.

Illustration of a woman inside a box with her arms and head sticking out the box. The box is labeled fragile. Text reads 'be gentle with me'.
©yourachingart_me
Chronic pain can also be pretty unpredictable and I can never plan for when I'll be in pain beyond my baseline everyday level of pain. The question of how much pain I'll be in and for how long I'll be in pain is something I will never know. I take various different medications to help manage my pain. I prefer to use the term 'pain relief' as that is what medication does, it doesn't kill or eradicate my pain, only bringing me a level of relief so that I am to a certain degree able to function and get through the day and the pain despite being in pain. 

It's hard to try and comprehend to explain to others including medical professionals, even those in my pain management team what it is like to constantly be in pain. Constantly being in pain affects me a lot, not just the physicality of being in pain or waking up at 3am with a raging migraine or having my bladder spasming so bad that I'm double bent and curled up crying struggling to syringe up some pain relief and turn on my heat pad. It's the emotional impact of being constantly in pain that I feel wears me down the most because the pain is so relentless and you become 'sick and tired of being sick and tired'. Those are the difficult days when you know you're 28 and you wonder if this is it for the rest of you life. Other days I feel more hopeful and able to cope with my health problems and associated pain.

I've found my appointments with the hypermobility pain team helpful and what I've learnt in these sessions I can apply to my other illness a little and hopefully (or one day) I'll see a neurologist from the migraine clinic which I'm really will happen (my referral is somewhere in space due to the pandemic). In the past I was under a local pain management service but they were as helpful as a chocolate teapot! My other symptomatic pain from my other illness and co-morbidities are also slowly getting sorted.

I know the pain will always be there to some degree but it's learning to live with an manage it. I know I will have my difficult days when I feel like I can't cope. Planing, pacing, activity management and regular rests help me to keep on top of my symptoms including my pain but it's journey to learn how to live alongside chronic pain.

*PEM - Post Exertion Malaise // PENE - Post Exertion Neuro-immune Exhaustion

Tuesday 21 September 2021

Craft tutorial: Zig-zag card

This month's make is a zig-zag card. You could make this as a mini scrapbook to give to a friend with scrapbook elements such as photos and things like ticket stubs etc. Alternatively you could use a co-ordinating card making collection to decorate your zig-zag card. In the photograph below ⤵︎ of the zig-zag card I've made I've used a co-ordinating scrapbook collection that came with co-ordinating papers, elements and stickers.


Difficulty rating: ★ ★  ☆ 

What you will need:

  • 3 pieces of card (around 300gsm to give your card enough stability)
  • Precision paper trimmer
    • If you don't have this you could use a ruler and craft knife on a cutting mat
  • Scoring blade on your paper trimmer
    • If you don't have this you could use a scoring board or a ruler and scoring tool
  • Ruler
  • Pencil
  • Scissors
  • Eraser
  • Paper creaser/boning tool or a ruler will be fine if you don't have one
  • Medium thickness (around 1 or 1.5cm) double sided sticky tape
  • Glue - quick drying craft glue and also a glue stick
  • Things to decorate and embellish
    • Patterned, plain paper and special effect paper
    • Washi tape
    • Stickers
    • Die cut elements - bought or ones you can make yourself
    • Card toppers
    • Stamps
    • Sentiments - stickers, stamps, die cut, card topper ones etc
    • Scrapbook items
    • Plus anything things else you would like to use
For this card made for the tutorial I First Edition 'Paper Flowers' paper pad and the Sizzix mixed effects gold card and some brown kraft paper. I also used a 'hello' die cut and a Sizzix flower die cut as well as a border and some sentiment clear stamps with black ink and finally some small 3D butterfly card toppers.

How to make your zig-zag card...

Step 1

You your paper trimmer with your first piece of card cut a piece of card 15cm in hight and 21.5cm in length

With your second piece of card cut it 15cm in hight and 20cm in length

With your third piece of card cut two lengths of card ⤵︎

  •     One will be 9cm in hight and 19.5cm in length
  •     The other will be 9cm in height and 18 cm in length    


Step 2

With the 21.5cm long piece of card score at 10cm, and 20cm - this should give you two 'pages' of your zig-zag card and a 1.5cm strip for your double sided sticky tape to attach the second piece of card (but don't join your two pieces of card just yet).

With your second piece of card score it in half at 10cm.

At each score line crease each line down using a paper creaser or boning tool if you have one alternatively you could use a ruler.

 

Step 3

With your first strip of 9cm by 19.5cm score at 5cm, 9.5cm and 15cm

This should give you a 5cm page, two 6.5cm pages and a 1.5cm strip for you double sided sticky tape.

With your second strip of 9cm by 18ccm score at 5cm, 9.5cm - this will give you two 6.5cm pages and a 5cm page

Crease down each score line.


Step 4

Put your double sided sticky tape on the 1.5 cm strip on both the main page and the inner 9cm piece of card that has a 1.5 cm strip which you will later piece together.


Step 5

On your two main 'pages' of card measure out in the centre the area you will need to cut out - this will a 5cm by 10cm rectangle with a 2.5 cm border around (see photo).

Using your precision paper trimmer, or if you don't have one you could use a craft knife on a cutting mat, cut out these two inner rectangles. These will be used to thread in your inner zig-zag pages.

Step 6

Join both the bigger pieces of card together; (this will help you work out the front and back pages). Make sure that you line up the join just right so that it easily folds but theres no lose gap on the 1.5cm strip.

Decorate the front and back pages - this is the side of card behind the page that doesn't have a rectangle cut out of the middle (see photo below ⤵︎ ). This won't be seen when your zig-zag is displayed but I find it nice to do this for presentation for when the card is folded up.

* Note: Ensure that you decorate each page correctly and the right way up.

So I've now decorated the front and back pages of my card ⤴︎ I've left the back page plain for me to write on for when I send this card to a friend.

I've used a stamp sentiment which says 'Butterfly Wishes & Flower Petal Wishes' and border at the bottom of the card. I've also used brown kraft paper, paper from the First Edition 'Paper Flowers' paper pad and the 3D butterflies (which were a gift) from HobbyCraft. 

You might be able to see in the photo how and where I've joined the two pieces of card together. The 1.5cm strip with doubled sided sticky tape on joins on the back of the card.


Step 7

Join your inner insert zig-zag pages in the same way as you did in the previous step.

Decorate the four inner 6.5cm by 9cm pages and the two end 9cm by 5 cm pages.


Step 8

Decorate the 4 pages - one the two pages with the cut out frames you can use your precision trimmer to make a frame or you could cover the page then flip it over and use a craft knife on a cutting mat to cut the centre piece out. Alternatively as shown below you could make 4 strips of card to fit the frame and affix them around the edge.



Step 9

On the inside end pages of your card measure out centrally a 5cm long line 3cm from the top and another from the bottom. 

This will be where you affix the two 5cm end pieces of your inner zig-zag - it's important to affix them centrally as it will ensure that you can close your zig-zag card (I've learnt this from my own mistake with making this card).


Step 10

Once everything is decorated and dried thread your inner strip through the two cut outs.

Affix both ends of the inner strip to the two end pages ensuring they are lined up and central (you may want to use an eraser to get rid of the pencil line). Let it dry and...

Voilá!

Tuesday 14 September 2021

Living with limited energy

When you have a chronic illness like M.E which limits how much energy you have it does have a massive affect on your life and how you adapt your life to live in the slow lane. How much energy you do or don't have is very individual from person-to-person depending on their illness. For me my M.E is classed as being severe so generally because of this I have to make the most of what little energy I do have each day and this varies day-to-day depending on if I'm having a good or bad day and other factors such payback from something I've done. What little energy I do have is very precious to me so I have to be very careful and cautious as to where I spend and spread out my limited levels of energy. Since I became ill over this time I've learnt how to live with limited energy and how to best manage the energy I have each day.

What many people don't realise is that everything takes up energy from getting dressed, brushing your teeth, washing, watching a TV program, reading,  listening to music, playing a game on your phone, any form of exercise. It isn't just physical activities that take up energy but mental activities too, even maybe something that brings up strong emotions may exhaust you.

teal background with white text reading being sick is exhausting on top of exhaustion this quote s by That Thing They Call Recovery
Like for most people with chronic illness/disabilities including myself my days are ever fluctuating and I experience good and and bad days. Depending on if I'm have a good or bad day this dictates how much energy I have and even within that I don't have a definitive good/bad day. I have great good days and okay-ish good days then I have my better bad days then my bad days where I'm crashed out in bed and really struggling. As a result I never know how much energy I'm going to have on any given day though my better days I will have more energy compared to my bad days where my energy levels will be depleted. 

This makes life pretty difficult as I don't know what kind of a day I'm going to have. Sometimes I can predict that tomorrow won't be so great if I'd done something that day that pushed my energy levels to it's limit but how bad the next day will be is a total unknown so it's hard to prepare for dealing with the following day.

Life with limited energy, whatever has caused that, is a challenge. Energy becomes something precious that you want to hold on to and you have to spend it wisely. This links in with Spoon Theory if you've ever hear of that?

I've found that regular rest periods throughout the day help keep my levels in check. Unfortunately reseting doesn't restore or restock my energy levels but it gives my body and mind opportunities an opportunity to pause which I find is much needed and I find the routine of alternating activity and rest periods help keep my energy levels in check, this is what I call my Daily Plan. Each day I have one main activity which I use my energy on doing; yesterday wasn't such a great day so my main activity yesterday was watching an episode of a boxset I'm enjoying. On a good day however I have more energy to do a bigger main activity. - I hope that makes sense? 

As well as my main activity I have low-level activity periods where I do activities that don't take up as much energy as well as spending my energy on washing, getting dressed, brushing my teeth, doing my hair - all the basics really which I do with the help from one of my PA's which make tasks easier and reduce my energy levels from crashing.

It's a very careful balance. Some other tools I've found helpful is pacing and activity management which is where my Daily Plan come in. Finding your own personal baseline is really important too, this generally involves working out how long you can do an activity for before you're energy levels drop and other symptoms flare-up. This baseline is different for everyone and may vary depending on the activity as well as if you're having a good or bad day.

My main advice to conclude this post is to see if you could do some work with an Occupational Therapist as I did to help you put together something like a Daily Plan. Take regular rest breaks; stop before you flop aka don't overdo it. Work out your baseline and put on a timer when you do an activity so you know when to stop. Learn about pacing and activity management including the traffic light system - Sickman Communications © have a great Pacing Pack which I have and I've found it so helpful including the traffic light post-it notes to plan my day and the Pacing book which taught me everything I needed to know about pacing. Write to-do list, this could be on your traffic light post-it notes, or on a list pad or on your phone (I love the reminders app on my phone). Also break tasks down so if you have laundry to put away do it in small stages, or ask for help - it's okay to ask for help; a helping hand can often save you some precious energy. Prioritise where to spend your days energy; if you're having a bad day it's okay to do very little - listen to your body. Finally since I've become ill I've learnt that things can be left to do the next day or week (unless it's super urgent and important).

Tuesday 7 September 2021

More than just a bad headache! - Migraine Awareness Week 2021

This week is Migraine Awareness Week. Alongside all the other symptoms that I have from my different illnesses living with Chronic Migraines (which affect around 2 in 100 people*) is something that I've just had to learn to live with as challenging as it can be.

"Migraine is a severe and painful long-term health condition that 1 in 7 people live with" - The Migraine Trust

I have roughly 17-20 migraines a month but they vary so much. One day I may have a bad migraine where I curled up in bed in the dark feeling so nauseous and unable to move and that may only last a few hours or I might get a more mild/moderate migraine that lasts for several days, or it could be the other way around. The unpredictability is hard as I know when I've got a migraine coming on but how bad it will be and how long it will last for is totally unknown.

There are different types of migraine; I experience Migraine with an Aura (which affect 1 in 3 people who experience migraines*) so I experience a visual aura or hallucination (nothing like a psychotic hallucination). This visual aura may be something like feeling like a light is being shone in my eyes or I will see little white and black dots like fireflies flying around. For me my migraine aura carries on into main migraine stage so I will have the aura alongside the headache pain stage which can be horrendous sometimes when the two symptoms are there side-by-side.

As well as experiencing Migraine with an Aura I also have experienced a rarer type of migraine which are Hemiplegic Migraines - thankfully I don't experience these very often and they where quite terrifying when I first had one. Down the right side of my body it goes numb and tingly and my speech slows down and slurs alongside the headache pain; to some it may look like a stroke but the symptoms dissipate after a few hours.

The 5 stages of a migraine


I take a medication called Sumatriptan at the start of a migraine. There is preventative medication but my GP wasn't sure what was okay to be prescribed to me due to the complexity of my different illnesses and the medication I'm on. I did get referred to a migraine clinic but due to the pandemic I got a letter to say that they're not seeing any new patients - that was around 18 months ago ad I'm still waiting and I have no idea where I am on the waiting list so I'm unsure how much longer I'm going to have to wait to be seen. I'm so grateful to have access to free healthcare but when you have a migraine most days you just want the problem to be sorted.

Difficulty is access care and medication is the campaign by The Migraine Trust for this year's Migraine Awareness Week.

With my milder migraines I have learnt to function in a limited way and I do plenty of things to help when I have a migraine. Medication obviously - my migraine medication and also pain relief. I also find laying down in a dark and quite room helps. I've also bought a koldtec™Halo headband which I find really helpful. Inside it has pockets for reusable icepacks and it helps a lot and it is something that I would recommend.

I do have triggers for my migraines such as certain foods for example garlic, wheat and gluten. I also find that I get migraines when I've visually overstretched myself such as reading lots of small print (so reading I now find difficult) or if I've been looking at a screen for too long. I also get migraines when I'm tired or when I'm unwell (like normal people unwell or when my chronic illness have flared up). Another trigger is when it's my time around of the month though this is a little erratic so I don't have a clockwork monthly week-long migraine. Tiredness or feeling exhausted is also a trigger (so having M.E doesn't help!).

Having Chronic Migraines means that I'm sensitive to light so I wear tinted lenses to dull the light I'm seeing though my glasses. I also find that I can be sensitive to sounds and smells. My migraines also leave me feeling nauseous and I have a lot of headaches alongside the headache pain part of a migraine. All these symptoms overlap with my other illnesses so it can be hard to know what is causing what symptom or sometimes my symptoms will be like dominos trigging off one symptom after another resulting in things like migraines.


Organisation & Helplines

➜ The Migraine Trust - *statitics from this organisation
        ☏ Helpline

➜ National Migraine Centre - About migraines