MSer Sally Darby set up an online network for disabled mothers in 2017. Here she shares her journey and explains why the conversation around disabled parenting needs to change.
I was diagnosed with multiple sclerosis (MS) in 2010 but my symptoms started in 2008. It began with optic neuritis which has left me severely and permanently visually impaired. At the time, I was told I might have a brain tumour. I was so relieved to discover that wasn’t the case. I was diagnosed after a second relapse involving numbness and tingling in my legs, as well as bladder dysfunction. Once the process started, things moved fast. I had an MRI and a lumbar puncture and was given the diagnosis within a couple of weeks.
Of course I was shaken. It’s a huge thing to take on board. I was getting married in a few months and I became fixated on getting through that day whilst fully mobile. I’m glad I walked down the aisle and danced the night away as that would certainly not be my reality now! I am very well supported by wonderful friends and family. My now husband was my rock. But yes, it was a hard time. I once heard someone say MS is not a death sentence, but it is a life sentence. I took that on.
Gradually, I started to accept the hand I had been dealt and live my life to the full with MS. Today, my condition weaves its way through every aspect of my life. It is integral to my being. I don’t believe I can separate myself from it, but I try my best to accommodate it, and work with it to provide the best outcomes for me and my family.
In 2017, I was a young mum with two beautiful girls, both of whom had been born after my multiple sclerosis (MS) diagnosis, and I felt extremely lucky. But I had never met or even spoken to another disabled mum. I felt like the only one in the world! Being a new mum can be isolating and lonely for anyone, but when the additional challenges of disability are thrown in to the mix, it can feel pretty desperate. Since becoming pregnant with my eldest in 2012 I had felt unprepared, isolated and judged. I had done endless Google searches looking for a community of mums who shared my experiences but found nothing.
Despite this, I had a strong feeling that I was not the only one who was feeling like this, and that creating a community of mums who had disabilities would benefit others, too. When I set up the Mums Like Us Facebook group I quickly realised I was right. The group grew quickly and many mums expressed their relief at finding somewhere they could share their feelings and experiences with other mothers who really got it. So I decided to launch the website.
We are simply bringing mums together in a safe, non-judgemental community where they can support and advise each other without fear of judgement. That was the goal at the start, and Mums Like Us does it every day.
Disability and motherhood
There isn’t much conversation about motherhood and disability, and I think it’s largely because of representation. I follow lots of brilliant disabled mums on social media, such as @nina_tame on Instagram, who talks about her life as a disabled woman and mother with unapologetic pride, confidence and ability, whilst highlighting the ableism that still very much affects her. But women like her are only just starting to make their way in to the mothering mainstream.
It is also, in my opinion, because the world of parenting is not geared up for disabled people. High street brands don't cater for the needs of disabled parents. This results in people having to pay huge amounts of money, or get charitable support, to have very simply adapted items, such as accessible cots or push chairs.
Schools, libraries and play groups are often difficult, and sometimes impossible, for disabled people to access. As a result of all this, disabled mothers are all too often left out of the conversation around parenting. Often anti-natal and post-natal care providers in the UK are ill-equipped to support new mums with very specialist requirements. They frequently have to figure it all out themselves. This is an added challenge at an already overwhelming time.
As I have become more confident, through my work with Mums Like Us, I have thrown off the self-judgement (mostly!) so I have stopped worrying about what others may or may not think of my parenting. I am bringing up my girls in the best way I can. I am doing my best, as we all are, and although my parenting has to be different because of my disability, it doesn't have to be inferior. Once you have this confidence it’s easier to block out any shaming.
Mums to be
If you have a disability, and are thinking of having a child, join Mums Like Us! On our Facebook group you can get advice from mums who have the same condition as you. Speaking to others and hearing their stories is incredibly empowering and insightful. They can also offer you invaluable practical advice.
I spoke at length to my MS nurses and neurologist before I decided to try and get pregnant. I would advise others to speak with their medical professionals. It will help them to be prepared for what is to come through the pregnancy the challenges they may face with a new baby. Above all, though, I would say no disabled woman is alone – you can do it and you will be amazing! It takes planning, and forethought, and adapting, but it is totally doable. Not only that, it’s empowering, and it gives you a reason to be grateful for and proud of your body and it’s incredible achievements – however much you feel it may have let you down in the past.
My vision for progress
I would like to see equipment for disabled mums sold in major high-street retailers. I would like to see them in parenting magazines and on websites. I would like mums like me to feel seen, respected and above all I would like them to feel they are not judged for parenting in their own unique and special way. This is part of a much wider societal shift that is needed, a shift that stops seeing ‘disabled’ as an insult and sees it as a neutral term. We need to change society and its attitudes so disabled parents can be CEOs of those high street brands, putting our needs front and centre. We have a long way to go, but we are moving in the right direction!
Visit www.mumslikeus.org to connect to other disabled parents and to find product lists which may be useful to new disabled mothers.
To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.
In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.
Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!
There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...
Photographer Hannah Laycock on the opportunities MS has opened up
When I was diagnosed with multiple sclerosis (MS) I was living in London. I’d been under quite a bit of stress in the lead up. I’d started playing squash again after not playing since I was a teenager, and the next day after a game, I felt a pain under my right shoulder blade, which progressed to numbness across my chest and right side.
My friend who is a massage therapist thought maybe I’d trapped a nerve. But the numbness moved around my body. My GP did some blood tests which came back normal. But I was worried because my dad had been diagnosed with motor neuron disease in 2008. As soon as I told my doctor this, they referred me to King’s College for an MRI scan.
By the time I’d got my results, my symptoms had really died down. I had concluded that I probably didn’t have motor neuron disease, because symptoms don’t come and go like that. So on the day of my results, I cycled from my workplace in Chadwell to King’s College. It was a big shock when the neurologist showed me the scans and pointed out areas on my spinal cord and brain.
I went straight to a friend’s house and fell to pieces. I was so confused and really went downhill and had another relapse. I then had a bad experience with a neurologist and ended up putting in a complaint, which drove my stress levels up further.
I found it really hard to accept, especially because of my dad having motor neuron disease. How could both of us have huge health conditions? For a while I’d been considering moving back to the north east of Scotland due to my dad being ill and, while I loved living in London, and had a lot of friends there, I had no family nearby and it was time to think about the future. My gut instinct was to move back home.
My parents live in Forres but I chose to move to Glasgow as it is the most similar to London in terms of the art scene and city life. But it wasn’t really for me. While I was there I had an interview for the Glasgow School of Art, but at their Highland campus, in the town that I grew up in. They created a role for me in photography and I ended up moving back with my parents for a bit.
Frustrations and opportunities
The uncertainty of my condition does trouble me. But, while I get frustrated with my symptoms on a daily basis, having MS had meant I’ve met lots of people I wouldn’t have normally. There have been amazing commissions and opportunities that wouldn’t have arisen if I didn’t have MS. In 2019 I was invited to commission a set of portraits of others with MS for the drug company Novartis. This was a dream job! I met lots of people at all different stages of their condition. The lived experiences you share connects you on a greater level. You share a level of understanding. I’d love to do more work like that.
I think having a condition like MS can lead to a lot of self-growth and adaptation skills. I was heavily influenced by witnessing what my dad went through. He was inspiring and positive throughout some really testing times, and that’s helped my own mindset and how I look at challenges.
My dad passed away in December 2019. He stopped taking in food and water himself. It’s been a challenging time because we felt that he was finally at piece and a new chapter was about to start, then lockdown happened.
My self-care has slipped a bit during this latest lockdown. I was good at the beginning, doing yoga at home and stuff. But I’m still processing my dad’s death.
My creative work is so important to me. I’d say to anyone newly diagnosed, doing something creative is a really good way to process something like a diagnosis. Don’t worry about the final outcome, it’s the process that’s the important part. It could be painting, dancing, pottery – anything. It just gets rid of some of the mental load. It can really help reduce stress, which of course is important for MS. Don’t worry about the results, just channel that energy!
This interview appeared originally in New Pathways magazine. To subscribe for just £1.66 a month, sunscribe here or give us a call on 01206 226500.
MS-UK Counsellor Jas Sembhi explains a simple way to cope with worries
Something that comes up a lot in counselling sessions is people saying that they are struggling to manage the uncertainty about their future living with MS (multiple sclerosis). The uncertainty may be due to not knowing how long their present symptoms might last, when another relapse might occur, how long the relapse may last or worries about ‘what if the symptoms do not go away if I have another relapse?’ Thinking and worrying about the ‘what ifs’ can affect life in the present. The worry may be so consuming that person finds they spend less time focusing on what is happening right now.
Write it down
One of the ways I work with people in dealing with uncertainty is by getting them to make a list of all the things that they are uncertain about. We can do this together in the session as it might help to talk this through with someone. Or they may wish to go away and do this after the session, and it is something we can pick up on the following week. The reason I ask to make a physical list is that sometimes it is easier to focus on what we have written down, it will be there for us to refer back to when needed as we work through it.
Once we have this list, we then work on making two columns. One for the things that can be controlled and planned for, and one for those that cannot. For the list of things that cannot be controlled or planned for, together we work on self-compassion and soothing emotions that the client would like to manage.
One way we work on fears about an uncertain future is by clients starting to remind themselves that ‘this is something not in my control right now, I cannot always control what may or may not happen in the future, but I can start to focus on what I am able to control and plan for.’ Hopefully, by being able to soothe fears with this kind of self-talk, a person can use this new way of thinking when the worries of the ‘what if’ creep in. Clients can start to re-train their mind and bring back their focus to what they have spoken about in the second column – the things they can control. To be able to regain control and then start making plans can be empowering and allow the focus to be on ‘I can’ instead of ‘I cannot’.
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MSer and HR expert Rebecca Armstrong explains how to ask for reasonable adjustments when returning to work
One of the topics that comes up regularly in the multiple sclerosis (MS) and work community is that of reasonable adjustments. As we may soon be re-entering the world of work the topic is very much alive and well, so in this column I am focusing on how to request a reasonable adjustment in the current working climate.
I think it is important to say that one of the more positive impacts of the last few months has been the fact that, for many jobs, home working has been a necessity and, on the whole, has worked. This has challenged those employers who might have been previously reluctant to think about things differently and this undoubtedly will open up doors and opportunities for more flexible working as we move forward.
Returning to work might be needed for the economy and even at an individual level for mental health, but that doesn’t negate the fact that it can be a very stressful and scary time, especially when you have an underlying condition such as MS. Employers are required by law to complete a Covid risk assessment and within that they need to consider how to keep their vulnerable employees as safe as possible. You may feel that it doesn’t fully consider your individual needs and feelings and that is where requesting a reasonable adjustment comes in.
Reasonable adjustments are there to help make work accessible for people who have a disability. They have a very broad scope and you can ask for what will make work feel safer for you. This could include working from home, flexible start and finish times (to avoid busy times), relocation of your desk, the type of work you do including your interaction with the public and of course some adjustments that may not be linked to Covid such as being situated near a fan or having dictation software. Adjustments can be permanent changes or temporary measures during a challenging period and you can also ask for them to be put in place on a trial basis if either you or your employer are unsure about how they would work in practice.
If you want to request an adjustment here are some top tips
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Research student Hannah Morris looks at how your coping strategy influences your quality of life when you have MS
Having a long-term condition is a lot to cope with, and as someone with multiple sclerosis (MS), this is something I’m very aware of. But often, how we go about coping and what style we use has a big influence on our overall quality of life.
What is coping?
Coping refers to an ongoing process of thoughts, emotions and behaviours relating to how a person deals with stressors. Different people use different coping methods in different situations, but ultimately the aim is to solve a problem and return to the original optimal functioning state.
The coping style we chose comes as a result of how we interpret a stressful situation to begin with. That is, we ask ourselves questions like
These types of questions usually guide the coping strategy that we will follow through with.
What are the types of coping?
There are many different coping styles, but they can all be broadly divided into two types, problem-focused and emotion-focused.
Problem-focused coping. This type of coping aims to deal directly with the cause of the stressor in practical ways.
Examples of this include gathering information, seeking practical support, considering solutions, evaluating pros and cons and making plans.
The advantages of this approach are that it removes the stressor and deals with the root cause and, therefore, provides a long-term solution.
On the other hand, there are situations where a problem-focused approach is not possible. For example, with MS, there is little we can do to control many elements of the condition and therefore tackling the root cause is often not possible.
Emotion-focused coping. This type of coping is more reactive and seeks to manage and reduce the negative emotions felt as a result of the stressful situation rather than the problem itself. Some types of emotion-focused coping are helpful and others are not.
Examples of this type of coping include seeking emotional support, acceptance, cognitive restructuring, positive reinterpretation, psychological disengagement, distraction, or turning to drugs or alcohol.
The advantages of emotion-focused coping is that they are accessible when the source of stress is out of a person’s control.
However, emotion-focused coping has been linked to poorer psychological wellbeing in people with MS, perhaps as it doesn’t deal with the root cause of the problem or provide a long-term solution, especially in the case where the less helpful methods such as distraction and disengagement are used.
My coping methods
During my first relapse after diagnosis I relied heavily on the less helpful types of emotion-focused coping. Until this point, my MS was very much silent and I was convinced I probably just had clinically isolated syndrome. So some four years later I had noticed the bottoms of my feet going numb, but carried on with life trying to keep distracted and ignore the fact that the numbness was slowly creeping up to my thighs.
In denial, I hadn’t sought any help. I didn’t even tell my husband to begin with, but he became suspicious as this once invisible symptom was becoming more outwardly obvious. He encouraged me to call my MS nurse, so I did, but, of course, I played it all down. The consequences of this meant that when I finally accepted that I was having a relapse and I did have relapsing remitting MS, I had to go through the same experiences and it was like being diagnosed all over again. It felt like the world was caving in on me as I went through the process of acceptance all over again.
Over time, I’ve been able to use more helpful emotion-focused coping by focusing on the benefits of having MS (yes, there are some!). It strengthened my relationship with my husband and family, it’s given me a passion for the work I do, helping others like me, it’s given me a sense of empathy for people with disabilities generally, and it’s made me appreciate the good days and the blessings in my life. These are all experiences I would not have had without my diagnosis and have made it a lot easier to live with MS.
I’ve also found myself able to use more problem-focused approaches in recent times, too. Due to pregnancy, I’ve been off treatment for over a year now and I’m anxious that I am now vulnerable to relapse, as is usual post-partum for me. I know this is a reminder that I do have MS and there are times that I still struggle to accept that, but I also need to make a decision about treatment and have been comfortable enough to weigh up all my options, speak to my loved ones and my MS team about it and make an informed decision about what’s best for me.
What style are you?
How do you react to your MS? What is your first reaction when you experience a difficulty as a result of your MS?
1. Do you call a member of your MS team and seek practical support? Do you think about the possible ways you can deal with the situation? Do you consider what has and hasn’t worked before?
2. Do you prefer to withdraw and stay alone? Distract yourself with other things? Find positives in the situation? Seek emotional support from friends and family?
If you answered yes to the questions in option one, then you are using problem-focused coping. If you answered yes to the questions in option two, then you are using emotion-focused coping. You might have even found yourself using a mixture of both.
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MSer and HR expert Rebecca Armstrong has advice on returning to work for those who have been shielding
Everyone with multiple sclerosis (MS) is classed as vulnerable under the COVID-19 government guidance however, some people with MS have been considered extremely vulnerable and for the past three to four months have been shielding. The government has now decided that people should stop shielding from 31 July. For many people this is an extremely stressful time as the expectation shifts towards getting back to work. Firstly, we must remember that even though shielding is ending, the virus is still active in the country and people with MS are classed as vulnerable.
Duty of care
Employers have a duty of care for the wellbeing of their employees and are obligated under The Equality Act 2010 to make reasonable adjustments. Furthermore, the COVID-19 guidance requires that a full risk assessment is completed within every business (and where there are more than five people, this needs to be a written assessment). Within this, consideration needs to be made regarding how all staff will be kept as safe as possible, including those who are vulnerable. In addition to this, employers should be holding individual conversations with those returning from shielding to support this transition. This might include
This is a challenging time for everyone. Employers are also navigating new guidance and working through how to support people. Discussion is the key to making this work and finding a way forward. Ultimately, safety is the most important part and, in line with government guidance at the time, employers need to ensure all measures are put in place. If you feel this isn’t the case and you are being put at unnecessary or unreasonable risk you can refuse to work, however, where possible, it is better to discuss this and try to resolve it.
Feature Writer Ian Cook investigates an interesting theory
One of the curious consequences of the current Covid-19 pandemic is that it has re-awakened interest in viruses as a cause of multiple sclerosis (MS) and, particularly, coronaviruses, which cause the common cold as well as Covid-19.
Covid-19 is a member of the coronavirus family of viruses and, for a long time, it has been speculated that viruses may be the elusive environmental factor that, along with genes, cause auto-immunity that starts MS. For years researchers have looked at the Epstein-Barr virus (EBV) as the most likely culprit. But, is it possible that coronaviruses, or a particular member of this family of viruses is involved, rather than EBV? And could the current Covid-19 pandemic lead to renewed interest in coronaviruses as a factor in causing MS?
Research into coronaviruses and MS has been going on for at least 40 years and, during this time, much progress has been made in developing a theory about how a respiratory tract infection could lead to a neurological condition. A paper published in 2000 in the Journal of Virology titled “Neuroinvasion by Human Respiratory Coronaviruses” observed that upper respiratory tract infections of viral origin could be an important trigger of MS attacks. Moreover, it was said that coronavirus seasonal patterns fit the observed occurrence of MS relapses.
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Early summer so far has seen some glorius weather so far but, whilst some may bask in the fact that we’d normally have to pay to go on holiday to get this heat, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity. Here are some tips to help you in the hot weather.
1 ) Think about your clothing
Whilst wearing shorts or loose clothing are obvious ways of keeping cool, changing your choice of footwear ican make a big difference, too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Liberate your feet with appropriate sandals to help them breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being only a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler, or try the freezer for faster results. Although your own body heat will warm up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler. It can make a huge difference, especially if your house faces the sun.
4) Unplug electricals that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time. You can even get versions for dogs!
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
Laura Goodall tells us about going from struggling to come to terms with her diagnosis to representing Great Britain in para showjumping
I was diagnosed with multiple sclerosis (MS) in 2015. I would lose the ability to feel temperatures and scald myself when I got in the bath. My skin would hurt and tingle, I was exhausted all the time, I’d fall over and I’d drop things. When I was competing on my horse, my muscles would collapse on me as soon as I got warm, my vision would blur and I’d fall off. I’d then struggle to walk for days after.
I had to stop competing as I kept having panic attacks on the horse while waiting for the symptoms to come. The more stressed I got, the worse the symptoms were.
At first, I was relieved to have a diagnosis and to know what was wrong with me. Then reality hit home. I got very depressed and felt like life as I knew was over and I’d never be able to do anything with my horses again.
I felt like I was going down a black hole. Everything I’ve worked for in my life was for my horses and I got to a stage where I couldn’t even look after them never mind ride them.
Taking the reins
Eventually, I decided I wasn’t going to let MS rule my life. I’m quite a determined person and felt I needed to do more and not just give up on my dreams. So I visited the doctors, was prescribed anti-depressants, and started to gradually get my fitness back up in baby steps. I began going out for a walk on the horses until I built myself up. Exercising definitely lifted my mood. The more I did, the better I got, and it actually made my symptoms less severe, along with my treatments.
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