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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MSer and Feature Writer Ian Cook discusses ageing and multiple sclerosis
As you know, lots of people live very long and fulfilling lives with multiple sclerosis (MS). But when it comes to public discussions of life, death and MS, there is often talk in the media of euthanasia, even though this is a choice actually made by a tiny minority of MSers. Sadly, you see little discussion of the decades of great life the vast majority of us live with MS. Unfortunately, as with most news coverage, everyone focuses on the negative.
Looking forward to my 62nd birthday in a few months’ time, it’s reassuring, therefore, to read research published recently by the US National Multiple Sclerosis Society (NMSS), that the majority of us MSers can look forward to an almost normal lifespan – well, a lifespan just a few years shorter than the general population.
The exact figure is seven years shorter but this isn’t so bad when you consider people with type 2 diabetes, on average, have a shorter life expectancy of about 10 years and people with type 1 diabetes, on average, a shorter life expectancy of about 20 years. MS is very little in comparison to these relatively common conditions.
As well as longevity, the research publicised by the NMSS challenges other preconceptions. MSers not only have roughly the same lifespan as others, but mortality studies show MSers tend to die from many of the same conditions like cancer and heart disease as people who don’t have MS. Although that doesn’t exactly sound cheery, my point is that MS isn’t always a factor. Apart from cases of severe MS, which are relatively rare, the prognosis is generally good.
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MSer and Feature Writer Ian Cook catches up with two HSCT patients one year on from the launch of new MS charity AIMS
Just over one year ago, I attended a black tie fundraising ball at Villa Park, Birmingham, launching a new charity promoting haematopoietic stem cell therapy (HSCT) for MS.
The new charity, Auto Immune & Multiple Sclerosis (AIMS), was set up to help people with auto-immune illnesses, particularly MS, to access HSCT treatment. HSCT is where an MS patient’s immune system is replaced or ‘re-booted’, and as a result the myelin coating of nerves in the brain and spinal cord no longer suffer the auto-immune attacks that characterise MS.
HSCT uses high-dose chemotherapy which wipes out the body’s existing immune system. The immune system is then rebuilt using stem cells which have been ‘harvested’ from the patient’s blood before chemotherapy and are then re-introduced afterwards. The newly rebooted immune system suffers no further auto-immune attacks, preventing further damage.
At the AIMS launch I met a number of MS patients who had received HSCT. So how are they doing one year on? One of the people I met was Damien Scott, who was diagnosed with relapsing remitting MS in 2004. Damien travelled to Moscow in 2017 for treatment at the A.A. Maximov Haematology and Cell Therapy Department of the National Pirogov Medical Surgical Centre. At the Villa Park event Damien gave me some background information about his trip to Moscow.
Continue reading the rest of Ian's report in the latest issue of New Pathways magazine which is free to download! Download New Pathways
I wanted to let you know that MS-UK staff are now working remotely to ensure that we can keep as many of our services available to support people living with multiple sclerosis (MS) as possible.
Due to a high volume of calls, responses from our helpline service may be delayed. However, if there is no one available to take your call please leave information about your query, email address and telephone number and a Helpline Information Officer will get back to you as soon as possible. Please note that it is likely that we will be able to respond to emails faster than telephone messages and that you may receive responses outside of office hours. To contact the MS-UK Helpline email firstname.lastname@example.org or call 0800 783 0518.
The MS-UK Counselling service will continue to run as normal and is unaffected. To register for MS-UK Counselling visit www.ms-uk.org/counselling.
If you attend Josephs Court, we will be ensuring you hear from us regularly and have created some exercise videos to support your activity at home. You can find them on our YouTube channel.
We appreciate your support and wish you all well during this challenging time.
Amy Woolf, CEO of MS-UK