Lockdown has had a huge impact on many people with MS in very different ways. We chatted to Jadie Codd, who finally received her diagnosis of MS following years of symptoms, on how she dealt with this, two young children and being pregnant with her third child during a pandemic.
Can you tell us a little about your diagnosis with MS?
I was diagnosed with relapsing remitting multiple sclerosis in February 2021, after finally receiving the MRI I had been waiting on for years. The MRI showed that I had a lot of lesions on my spine, more than I could count, but only three on my brain, two of which looked active. The neurologist explained that the lesions on my spine attribute to my physical disability. I took this as good news, as a mother of three, I find the physical limitations easier to deal with than the mental impairments. The diagnosis didn't surprise me at all, in fact I felt hugely relieved, finally I could get the help and support I needed.
Did you know much about MS prior to your diagnosis?
I thought I did. I had been suffering with what I now know were relapses for three years prior. I had joined a couple of Facebook groups after Googling my symptoms and finally found other people experiencing similar symptoms. However, when I was diagnosed and given various options of medication and suggestions to change my diet, I realised I was overwhelmed with information and didn't know how to decipher it.
We know that many MS health professionals have been redeployed to deal with Covid. What impact did this have on your treatment plans and your direct care?
After my diagnosis I was assigned an MS nurse and she told me she would contact me to further expand on the heap of information I had been given by the neurologist. I waited weeks, longer than in normal times, before I was contacted because her workload had increased. Meanwhile, I was suffering horrible side effects from the steroids I had been prescribed, and had no one to speak to.
Looking back over 2020, how did you find lockdown overall? What changed for you and your family?
I was pregnant for pretty much the entire first nine months of 2020. I found out I was pregnant during a relapse, which meant I had to cancel my MRI until after the birth. I was already having difficulty walking, extreme fatigue and I was struggling to complete my university coursework, let alone managing to do the school run, after school clubs and prepare meals. When lockdown came to be honest I was relieved, my husband was forced to work from home and has remained working from home ever since. This immediately gave me physical support. I was glad that in the beginning the schools were disorganised, I was able to focus on core subjects, at flexible times that worked for the children and my illness. I was able to sleep in in the mornings and have a nap in the afternoons after the schoolwork was complete.
I was able to have midwife appointments but they suggested that even though my MS was undiagnosed at the time, I was still considered high risk due to it. I was placed under consultant care and told I couldn't have a home birth. As we were in a pandemic and I couldn't see how having the baby at home would be affected by my physical disability, I contested and was eventually allowed a home birth. My home birth was beautiful and peaceful. My mobility was seriously affected afterwards so I was glad I could rest on my sofa, I would have struggled to walk out of the hospital and the car ride home would have been painful.
The positives I take from the lockdown are being able to spend time and reconnect with my family, often the pressures of everyday life and my illness make every member of the household feel stressed and disconnected from one another. Having nowhere to go gave me the opportunity to rest and it made my whole pregnancy a lot easier to manage with MS.
Many people have found lockdown to be a very negative experience, what were the hardest parts for you?
The hardest parts of lockdown for me came during the second lockdown. By that time I had a baby as well as my two other children, my MS flared up after I gave birth and six months later my ability to walk has still not fully recovered. The children's school was more organised and so that put more pressure on parents to deliver the curriculum to a higher standard than before. I have been leaning heavily on my husband who still has a demanding full time job to do, this created tension in our household at times. We've also found isolation from family and friends much tougher this time, the children are bored and quite frankly we all need different company.
I used to attend regular classes at the gym. Even during a relapse, my instructor was able to adapt the exercises to suit my ability. It made a HUGE difference to my strength and how well I was able to cope physically during a relapse. As fitness classes were cancelled at the start of the pandemic, the relapse I was suffering during my pregnancy with the added weight of my growing bump meant that my body was not strong enough to carry itself most days, and everyday tasks became extremely difficult. This continued after the birth and I am still struggling to regain the strength to manage my disability without regular gym workouts.
Looking forward to a hopefully lockdown free future, what hopes do you have? What are you looking forward to getting back to?
In the future I'm hoping firstly to get my fitness back, to be able to agree on a medication which stops my relapses with minimal side effects whilst still allowing me to continue breastfeeding. I'm hoping I can socialise and enjoy the company of family and friends safely again. But I'd also like to retain some of the slower pace of life we've gained during the lockdown, to have the opportunity to rest when my body asks for it and to spend uninterrupted time with just my husband and children.
Does a sense of humour help when you're living with MS?
30/06/2022 - 00:00
Nigel Bartram was diagnosed with multiple sclerosis 13 years ago. In his new book MS A Funny Thing (well s😊metimes), he looks at some of the more comedic elements of living with a chronic illness.
Updated NICE multiple sclerosis guideline contains some good news and some bad news
22/06/2022 - 00:00
There are some positive points in the revised 2022 guideline but the MS Trust is disappointed that NICE has been unable to recommend Fampyra.
Connors letter to MS
21/06/2022 - 00:00
In 2022, Connor will be taking part in the Great North Run to support the MS Trust. Here, Connor writes a letter to MS, openly sharing his thoughts on the condition his sister was diagnosed with at the age of 14.
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