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“I realised I am not like other mums”

Posted on: November 10 2020

carla.jpgMSer and career coach Carla King on the ups and downs of parenting with MS

I’ve wanted to be a mother for as long as I can remember. In my role, I am simultaneously elated and exhausted but the reward far, far exceeds anything that might feel testing. TV and film often send up parenthood with comic effect. We laugh along because it’s funny, but the truth is that mixing multiple sclerosis (MS) with parenting can be more guilt-tripping, than comedic.

Idealised parenting

For years, I would push myself to get through the school run, particularly as this was toward the end of the day by which time my energy reserves were depleting. This meant I could just about muster collecting my son and the bus ride home, but not to go into lengthy discussion with other parents. Why push myself? Because I thought motherhood was all about sacrifice and how I was supposed to behave, even with MS.

Adapting to parenting with MS

Even before lockdown, I had scaled back playdates due to energy levels required to ‘entertain.’ By this I mean just coping with the noise, keeping one eye on preparing for a feeding frenzy and the other on anyone intent on killing each other. Yet children have an extraordinary way of turning anything into play, so now there are many more Zoom, WhatsApp and phone calls.

I am heat-sensitive, which makes me unwell. In the height of the summer, I avoid the park after school. If we don’t end up in our garden, you’ll find us making ice cream smoothies.

Routine isn’t just for children, some of us with cog fog need it too. If I have some semblance of routine, I can remember tasks more easily, for example, putting out school uniform on a Sunday night, or PE kit ready for Tuesday.

Halloween at Carlas.jpgReframing

In mid-October, I experienced a level of fatigue that knocked me for six. I don’t know why. A couple of weeks later, having decided to forgo trick or treating, I hatched an alternative plan for Halloween. I baked for days and put on a surprise ‘party.’ I really thought this would come at a price, but it didn’t. Literally, zero fatigue. Sometimes, we can track trigger points but, as in the former example, MS sometimes can be a conundrum to get through and not question.

The important take-away? My son had his Halloween (and some fatigue you can’t predict).

Learnings so far

I remember doing everything I could to make sure that my child didn’t feel I was different to other mums. This came at a cost and a realisation – I am not like other mums. A couple of years ago, I decided to stop comparing myself to anyone else. The only person I need to worry about is the only person in the world who calls me ‘Mummy.’ In all honesty, we would both rather I be authentic.

Avoiding MS parenting guilt

  1. Focus on what you can do, not what you can’t.
  2. Talk to your child. Be age-appropriate, but be open. They really appreciate it and they understand more we think. No young person needs to be worrying about us unnecessarily.
  3. As tempting as it may be, stop comparing yourself to others.
  4. Focus on what you are giving your child. Think about the empathy, values and resilience we are developing in our children.

Ok, so my bakes aren’t always perfectly decorated, I’ll not run marathons or paraglide, and I’ll always have to work harder than a parent without a chronic condition. But I’ll always try my best and I’ll always be me. My child doesn’t need me to be everything all of the time. When the chips are down, Mummy is enough.

 

Carla works as a Career Coach and was diagnosed with MS in 2008. Carla often supports MSers through diagnosis and beyond. She also presents to audiences from the MS community and the MS field. Carla is the author of a blog about living, working and parenting with MS, called My MS Bully and Me.

New shielding advice Thursday 05 November

Posted on: November 05 2020

The Government has published new advice for the clinically extremely vulnerable for keeping safe in the new lockdown which came into play at 12am today.

If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.

If you are clinically extremely vulnerable, you are strongly advised to stay at home at all times except for exercising and doctors’ appointments. You are strongly advised not to go to any shops or to pharmacies.

You are encouraged to ask a friend, family member, carer or a volunteer (for example, one of the NHS Volunteer Responders) to collect your medicines for you. If none of these are available, contact your pharmacy to inform them you are clinically extremely vulnerable and need your medicines delivered. They will arrange this free of charge.

If you have symptoms of COVID-19, you should arrange to have a test. You may wish to request a home test to be sent to you or consider attending a test site at a quieter time.

You should continue to seek support from the NHS and other health providers for your existing health conditions and any new health concerns.

You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more, visit NHS Health at Home or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.

Any carers or visitors who support you, or a child or young person in your care, with everyday needs, can continue to visit. They should follow social distancing guidance where close or personal contact is not required.

You should also continue to access support from local charities, organisations and NHS Volunteer Responders. As well as helping with shopping and medicines delivery, NHS Volunteer Responders can help with a regular, friendly phone call and transport to and from medical appointments.

Call 0808 196 3646 between 8am and 8pm to arrange support or visit NHS Volunteer Responders.

Try to keep all contact with others to a minimum and avoid busy areas. Whenever you go out, continue to maintain strict social distancing, wash your hands regularly and avoid touching your face.

You should also try to stay two metres away from other people within your household, especially if they display symptoms of the virus or have been advised to self-isolate.

You can exercise with those you live with or in your support bubble. If you cannot work from home, you should not attend work. You may be eligible for statutory sick pay, employment and support allowance, universal credit or the coronavirus job retention scheme during this period of national measures.

The formal shielding notification you receive may act as evidence for your employer or the Department for Work and Pensions (DWP) that you are advised to follow shielding guidance and should not work outside of your home for the period stated in the letter.

If you were on payroll before 30 October 2020, you may also be eligible for the Coronavirus Job Retention Scheme (on furlough), which is being extended until 2 December. Speak to your employer if you think you are eligible.

Other people you live with who are not clinically extremely vulnerable themselves can still attend work if they cannot work from home, in line with the wider rules set out in the new national restrictions from 5 November.

People who are defined as clinically extremely vulnerable are at very high risk of severe illness from COVID-19. There are two ways you may be identified as clinically extremely vulnerable:

You have one or more of the conditions listed below, or

Your hospital clinician or GP has added you to the Shielded patients list because, based on their clinical judgement, they deem you to be at higher risk of serious illness if you catch the virus.

If you do not fall into either of these categories and have not been informed that you are on the Shielded patients list, follow the new national restrictions from 5 November.

If you think there are good clinical reasons why you should be added to the Shielded Patient List, discuss your concerns with your GP or hospital clinician.

Adults with the following conditions are automatically deemed clinically extremely vulnerable

  • solid organ transplant recipients
  • those with specific cancers
  • people with cancer who are undergoing active chemotherapy
  • people with lung cancer who are undergoing radical radiotherapy
  • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  • people having immunotherapy or other continuing antibody treatments for cancer
  • people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
  • those with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
  • those with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
  • those on immunosuppression therapies sufficient to significantly increase risk of infection
  • adults with Down’s syndrome
  • adults on dialysis or with chronic kidney disease (stage 5)
  • women who are pregnant with significant heart disease, congenital or acquired
  • other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions

“I don’t have to make a mess of the music in church anymore”

Posted on: November 04 2020

nina picx22.jpgNina Pearce discusses her journey since diagnosis

I know that my multiple sclerosis (MS) probably began when I was 30 and had just had my second child. I had optic neuritis, where there was a big blank splodge in the vision of one of my eyes. It got better with no treatment and no mention of MS. I thought I had had a stroke as the left side of my face was numb.

I wasn’t very sympathetically told I had MS, nor of any treatments. That was left to the fortunately much more understanding MS nurses who told me what type of MS I had and the treatment for pain and spasms I get.

Progression

I was OK for about three or four years, then my condition began to develop and my balance got much worse. My dominant left hand developed a tremor, so it was a relief that I retired from teaching in 2014 as I couldn’t write any more – marking books was out of the question.

I used to play the piano, organ, violin, trombone and guitar, but even playing the organ in church can no longer happen. Fortunately my husband retired as a vicar so we moved permanently to the bungalow we bought when I was still teaching. We are in a new area and I don’t have to make a mess of the music in church any more.

Welcome support

I have found MS-UK invaluable for support and help. In spite of COVID, the online gym sessions and the classes such as seated yoga are immensely enjoyable and I would suggest that anyone should take part. If you look on their YouTube channel here you may find more activities to join in with.

My mum has had relapsing remitting MS for about 60 years and counting. She refuses to use a rollator and begrudgingly uses one stick. I grew up having to do more in the home than many of my friends, something I tried to tell my children about as they were growing up!

I need my rollator in the home and to get to the car, or my new mobility scooter and not forgetting my tricycle. We have completed 1,200 miles so far this year. I cannot balance on an ordinary bike anymore. My husband helps push me up the more steep hills, and we try to do four and a half miles a day.

We look after our youngest granddaughter one day a week and I’m very glad that the government has said grandparents can do childcare. This has meant that we can also be on hand to pick up any of our other grandchildren from school, which we enjoy a great deal.

 

 

What is a trustee?

Posted on: November 04 2020

logo-trustees_week_landscape_cmyk.jpgThere are approximately 196,000 charities in the UK and just over 1 million trustees. Trustees are the people in charge of a charity. They help to make the UK the sixth most giving country in the world.

They play a vital role, volunteering their time and working together to make important decisions about their charity’s work.

This week is Trustees’ Week (2-6 November), an annual event which showcases the great work trustees do and highlight opportunities for people from all walks of life to get involved and make a difference.

At MS-UK our dedicated Board of Trustees works closely with the MS-UK management team to develop and ensure the effective implementation of our Strategic Plan. All of our trustees come from different backgrounds and bring with them their career and life experience to help grow and progress the charity. You can find out more about our trustees here.

 

How do I become a trustee?

If you’ve ever thought about becoming a trustee there are many charities across the UK with vacancies, take a look www.trusteesweek.org/find/.

Why I take medical cannabis

Posted on: November 03 2020

IMG_5956-28.jpgAustralia resident Jason Jordan was finding life with primary progressive multiple sclerosis very difficult until his neurologist suggested he try medical cannabis

Looking back, I can tell now that I probably had primary progressive multiple sclerosis (PPMS) from at least the age of 21. It wasn't diagnosed until I was 40 but, in retrospect, many of the strange ‘illnesses’ I had experienced weren't ‘viruses’ or ‘ear infections’ as my doctor would always claim. I’d experienced things like a lack of balance, clumsiness, flat footedness and short-term memory issues.

One day, half of my face went numb and droopy. But it wasn't until the double-vision kicked in that I really got concerned. I had been working in IT for years. At that point, I was a very early adopter of having two large screens. One afternoon, my eyes would not lock back into stereo vision. Instead I had two separate vision streams. It took a good 20 minutes for it to become normal again.

So I jumped on Dr Google and worked out it was most likely MS. My GP wasn't so sure. But the neurologist identified a problem as soon as I walked in, managed to get me straight into an MRI, and was able to get me started on treatment within 48 hours. 

Fast progression

Whilst I had read up on what MS is and what it was likely to do to me, like a lot of men, I felt bullet-proof. I'd been having all sorts of minor symptoms but I still believed disability would never happen to me. But it did, of course. Incredibly slowly at first, but it accelerated. So early on, I totally under-estimated where MS would take me. And for a long time I didn't deal very well with the symptoms. My mental self-image is of a passionate, capable, ambitious high-achiever – so you can imagine what the progression did to my mood and my demeanour. 

By the age of 40, my wife and I had built quite a large technology company, but the progression of my MS was making it exceptionally difficult for me to live up to my responsibilities and deliver on the promises I had made. Confusion, cognitive problems, logic issues, memory gaps and fatigue meant I either had to stop being the Managing Director or the business was going to fall apart. So we were forced to sell. In retrospect, it was for the best as the technology support market has since died, but at the time it was soul-destroying as up until that point in time, I had defined myself by what I do.

By 2016, I had been on virtually every medication available for MS. The best any of them were able to offer was to slow down the progression of the disease, but until Ocrevus, I'm not sure any of them did. Certainly none of them treated the symptoms. For that, I was given opioids, antidepressants and other toxic, synthetic drugs that made me feel terrible.

Out of hope

In early 2017, my neurologist told me that we were out of options. He forewarned me that I was likely to be using a wheelchair in a matter of months. Then he said to me that we could try a new legal option – medical cannabis. I had been brought up my entire life to reject cannabis as a gateway drug with no medicinal value, but I had no other choice.

By the time I started on medical cannabis, I was using a walking stick, beginning to be incontinent, and having difficulty finding my words and then pronouncing them. I had terrible pain in my toes, fingers and cheekbones and the numbness and burning had grown from my feet to my sternum. I was often quite confused, and I was angry, frustrated and depressed.

I was so very fortunate to have a neurologist who cared enough to investigate all available options. A progressive, educated professor who knew that once the conventional options had been exhausted, the fight still needed to continue. He gave me an option. He told me to research it and then supported me in the convoluted process of getting a prescription. He was not scared of peer group pressure. He put the patient first and for that I am eternally grateful.

Big improvement

Since having medical cannabis, I am 80 per cent back to normal. I will never again be 100 per cent as my brain is physically damaged. There are many, many large lesions in both my brain and spinal cord, and medical cannabis does not have any repair effect on those. But it does have a massive effect of the majority of my symptoms. I have weaned off five of my seven daily medications. I no longer take Oxycontin, Baclofen, Sertraline or Pregabalin and I avoid taking Seroquel unless I have to. I still need Pramipexole, a Parkinson's-type of medication that stops the shakes I get of an evening, but I feel so much better as a result of not having to take so many medications. My anxiety is massively reduced from not knowing what effect the potential interactions of so many drugs have.

I take a relatively large quantity of legal medical cannabis oil every day, prescribed by my doctor. The benefits have, for me, been amazing. I no longer use my walking stick. I have balance and leg strength. I no longer have any pain whatsoever. My cramps and spasms are about 10 per cent of what they were. My memory is at least 80 per cent improved. Whilst I still have the occasional urgent need to get to a bathroom, it's no longer a ‘problem’. I am back to being the person I imagine that I am. I feel alive.

This is not a miracle drug or a panacea, but seeing as though it's legal here in Australia and has so few side-effects for me it's worth trying. It's been so good for me, I felt I had a responsibility to let other people know about it. I now apply most of my free time to being a patient advocate. I tell medical professionals like doctors, nurses, pharmacists and scientists about my experience, and I also talk to other patients and their carers about trying it. If it helps just one more person, I'm doing good work.

 

Is it legal?

In the UK, a drug called Sativex is licenced to treat muscle spasms and stiffness in MS, which is taken by mouth as a spray. The main issue with Sativex is accessibility as it can prove tricky to get as many doctors aren't keen to prescribe it. It is available via private prescription from a doctor. This can work out expensive, around £500 a month. Speak to your GP or neurologist about the possibility of trying this treatment.

"What’s my body really telling me? Is it my fears goading me again?"

Posted on: November 02 2020

SC2.pngMSer Sarah Cross discusses how she deals with the ongoing potential for relapses with her condition and the possibility of progression

As a relapsing remitting MSer, one of my biggest difficulties is recognising a relapse. My first one many years ago was recognised by my consultant at my annual check-up appointment – he spotted foot drop when I walked into his consulting room.

After checking me over, he diagnosed a relapse which he thought had actually happened a few months previously but which was still affecting me. He prescribed a short spell of steroids to try and control it. I remember saying to him that I had wondered why my foot wasn’t doing what it should!

Since then, coping with the ups and downs of multiple sclerosis (MS) is a big challenge and, on a bad day, or if I’ve had a few bad days, one of the dark questions at the back of my mind is of course ‘is it a relapse?’ I’ve read somewhere that for it to be officially a relapse

• Old symptoms must be worse or new symptoms appear

• Symptoms must last for at least 24 hours

• They must occur at least 30 days after the last relapse

• There must be no other explanation for the symptoms

That all sounds very straight forward, but life and one’s day-to-day wellness just aren’t so clear cut. The obvious question all the time is ‘am I just off colour/a bit down/fatigued after a busy spell or is it a relapse?’ especially if you’re not feeling too good and you’re missing out on family gatherings/events to stay in bed and the negative gremlins start to goad you!

Confusion and fear

I find the advice of ‘listening to your body’ is much harder to follow than it sounds. The body and brain are so very complex and influenced by so many fears, knowledge, lack of knowledge, trying to appear well in front of friends and family, not wanting to make a fuss, not wanting to bother busy people such as GP, consultant, nurse over something that might be nothing. I end up more confused and fearful if anything. MS symptoms are known to be hugely variable and relapses could be anything. What’s my body really telling me? Is it my fears goading me again? Is it just the aches and pains of age? It’s very difficult to get a sensible answer and the unbiased truth from your body if truth be told!

And I know that getting treatment promptly for a relapse is important in order to reduce the amount of damage my rampaging immune system can do to my nervous system.

I’m currently having severe back pain which started about 18 months ago. Whilst I’ve had back pain problems on and off throughout my adult life (don’t we all!), and from a herniated disc 20 years ago, this pain has been severe but different from my ‘usual’ back pain. Again, the questions of ‘Maybe it’s a relapse because my balance, spasticity, leg weakness and drop foot are worse despite my exercising to improve those things?’ or ‘Is it just my old injury resurfacing but worse because I’m so much older?’ and ‘Is it simply triggering relapse symptoms?’ come up. I’ve recently finally contacted my GP and consultant because the severity is now stopping me sleeping and because I’m becoming reliant on anti-inflammatory and strong pain-killing drugs. My consultant has suggested an MRI scan to try and see what’s going on. He did suggest this about a year ago because I haven’t had a scan since I was first diagnosed some 15 years ago in order to see how my MS was progressing.

I think my reluctance then was the fear of knowing too much about my MS, even though it could help me with my back problem which is probably nothing to do with my MS. But that word ‘progressing’ does strike fear into me!

Secondary progressive MS

I’ve only recently become aware of the possible transition to secondary progressive MS. ‘What’s that?’ ‘Do I want to know?’ ‘Do RRMSers always progress towards secondary progressive?’ ‘Why do/don’t they?’ ‘Can I prevent it?’ ‘Should I just keep going as I am and just not think about it?’

It’s easy to do that when you feel well but when you’re not feeling well that’s when the fears, confusions, doubts, denials arise.

What I’ve learned since joining Josephs Court is that I need to try and keep myself as fit and healthy as I possibly can. Josephs Court’s staff, with their exercise regimes and classes, wellness training such as mindfulness, reflexology and seated yoga, and social events keeping MSers in contact to share life stories, experiences and everyday life have helped me massively to achieve this.

But I still have problems knowing when I need to ask for medical help, and having the confidence to do this when my gremlins are telling me that I’m simply making a fuss and everyone’s far too busy to deal with my fuss! But I’m confident that keeping in touch with Josephs Court, MS-UK and their clients will continue to help me cope with my MS and to ask for help without wasting time worrying about my fears, and worrying that I’m wasting other people’s time, so that I can live my MS life as positively as possible.

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