Tuesday, November 23, 2021

Guest Post by Angelica: The positives of receiving mail & the Chronic Warrior Collective

Digital image of a stamp with a baby phoenix image inside the stamp the colours are orange, green, blue and purple and the baby phoenix is holding a blue heart
In late 2017, I was at a bit of a low point. I was overwhelmed with taking college classes and battling with the symptoms that come along with being a full time chronic illness warrior. I felt stuck and I felt like I did not have friends that truly understood what I was feeling every day.

I remember searching on Google one day “online groups for young adults who have chronic illnesses”. As I scrolled through the long list of search results that were displayed before me, my eyes locked in on the words “My Chronic Connection” (which is the former name of what is now The Chronic Warrior Collective). I remember saying to myself, “This is it!”


So, I joined the Chronic Warrior Collective in 2017, and shortly after I signed up to participate in the Chronic Warrior Card Swap. The idea of receiving snail mail or “happy mail” as I like to call it, literally made my heart so happy. I would soon start to write/send and receive “happy mail” from chronic illness warriors all around the world (i.e. various cities in the United States, Canada, Belgium, the United Kingdom & Australia, just to name a few). I have made friends from all over the world and I have met some of my closest friends through the Card Swap. And, you know what the greatest feeling I get from participating in the Chronic Warrior Card Swap is? The exhilarating feeling that I still feel whenever I receive a card or letter in the mail is that almost four years later, I am still able to be a part of something that I didn’t even know I needed.


I honestly believe that in this life — which we are so blessed to have, we should always find a way to uplift and encourage one another as we were meant to do life together, not alone. The Chronic Warrior Card Swap does just that. It has allowed me to be able to make lifelong friends who understand what it is like to battle the daily struggles of chronic illness. It has also enabled me to uplift and encourage my chronic illness warrior friends by sending them “happy mail” that will brighten their day and bring a smile to their face. This is the epitome of what the Chronic Warrior Card Swap means to me.


Red background with a photograph of a selection of four note cards
I invite you to come join me in sending some “happy mail” this holiday season. Register by Nov. 30th to participate in December’s Holiday themed card swap.*


* If you don't celebrate the holiday season you can opt to receive and send non-holiday themed mail; you can select this perforce when you sign up to the Chronic Warrior Collective Card Swap scheme.


To join in and sign up go to the Chronic Warrior Collective Card Swap sign up.

Tuesday, November 16, 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 factitious. In all honesty when this happens it's really upsetting and I don't feel like my very real and very physical illness or indeed myself I don't feel believed or understood and at time it's makes me question myself. My struggle with my mental health precedes becoming chronically ill and now my depression and anxiety are exacerbated by my chronic health problems. Being chronically ill is 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 - the list goes on. There is so much more to having a chronic illness/disability than meets the eye.

As well as your illness(es) taking a toll on your body it deeply takes a toll on your mental health. 

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 but 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' followed shortly after when I was referred on by the consultant I saw in 2017. Even after then 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. This 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 ward in Leeds 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 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.

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 recommended as a support tool but the problem with that is that for some like myself CBT isn't for everyone and other types of therapy are 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. 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, November 09, 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, November 02, 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).