Helena and Marissa, two members of MS Trust team who live with MS, chat about how they are coping with self-isolation, and the things that are helping them get through this very strange time.
Marissa: I'm currently self-isolating because I had the second round of my Ocrevus treatment last week, so I'm trying to be really, really careful, making sure I don't pick anything up, especially the coronavirus. Isolating makes sense to keep myself safe.
Helena: Were you given that advice? You were self-isolating a little before the rest of us weren't you? Were you given that advice at the clinic?
Marissa: They did yes, when I went for my second infusion they told me they’d actually cancelled the majority of infusions and had decided to just bring in anyone that was having the second half of their first round, which included me. They wanted to ensure that the first round was effective. During my appointment (which was before the main lockdown) they were advising that I should stay away from large groups, avoid anywhere where people would be touching things as much as I possibly could and to be as careful as possible for the foreseeable future. They were so lovely when they were giving us this advice, and it sounds quite similar to the advice that everyone's been receiving anyway, I think we just got it a bit earlier then everyone else did.
Helena: How are you finding it being at home?
Marissa: It's definitely a transition! I would say it's harder than you'd expect, I'm sure everyone who's at home is finding that. For me it’s about keeping things as normal as possible. I'm trying to get up and go to bed at the same time and find a bit of a routine. But also making sure that my window is open so I'm getting fresh air, making sure my desk is clean and tidy and remembering to drink plenty of water. It’s harder to remember that now people aren’t running past me every two minutes in the office to fill up their water bottles! So I think it's trying to keep things as normal as possible really, it's making it a bit more manageable. How are you finding it Helena?
Helena: It's very strange, because you look out the window and you see people outside and here I am sitting in a lockdown. My husband is coughing so we’ve all stayed at home, I’ve also got the kids staying at home because of the schools shutting, so it's been quite strange. There's lots of online resources which have helped and as you were saying we’ve being trying to make sure we have a routine. We actually sat down and did a schedule for the children, this is what you will do for an hour here and an hour there. Also I think especially for children it's important to get outside and get some fresh air, so they’ve been in the garden a lot.
I think it's trying to keep things as normal as possible really. It's making it a bit more manageable
I’ve been trying to keep things organised around me. I was looking at the Mind website recently and they were talking about keeping things tidy and clean around you, to help you feel less anxious. The kids were trashing their rooms and I said ‘Well you wouldn't do this in school would you?’ and it's the same if you were in the office, you wouldn't be sitting in your pyjamas or have lots of rubbish all over your desk, well I say that but I do have a very messy desk at work!
I asked in our MS Trust Facebook group, if anybody has any tips for things that are keeping people occupied. A lot of people said things like gardening or stitching or drawing, one guy was talking about building Lego!
Marissa: Being creative is really good for you and keeping your mind going. The main thing I need to do is not let myself go for a nap, because when I'm home I love napping! I think I just need to make sure that I'm filling my time so that I don't enter a really horrible sleep cycle, when you end up napping and then you can't sleep until 11pm and then you're waking at funny hours.
Helena: I agree with the napping part. I find if I sit still too much the fatigue gets overwhelming and I have to open the window or do something to try and not fall into it. How are you doing about practical things like shopping?
Marissa: Luckily, me and my partner, we haven't been stockpiling any tinned goods or anything, as we are very aware that many people can't do that. But we decided to buy a lot of fresh fruit and vegetables and batch cooked a few things, so luckily we've got some stuff in the house already. We have done a click and collect that we can pick up next week. There's also a taxi company in Cambridge who are offering to pick up your shopping for you and leave it on your doorstep. The neighbourhood where I live have set up a WhatsApp group, they are trying to allocate a rep to every street. It seems to be doing really well and there have been people signing up, so I feel like if I did start to panic about things like shopping there are so many lovely community projects starting to crop up. I could also phone my local council or citizen’s advice if I need any more information on what’s available. What have you been doing?
Helena: We’ve been doing the same, we had a delivery yesterday, but there were loads of things missing, there was no pasta, no baked beans or toilet roll. But I have some friends that have helped me pick up some bits and as you were saying about the WhatsApp group, there's a similar initiative near where I live. I get really touched and really happy when I see how creative people are in using their amenities and using technology for good. I think, even though times are really hard, it's good to think about how extremely kind and helpful people are and how much they want to help.
There’s also a lot of people who have given out their contact details, saying to give them a call if they can do anything for you. My friend who brought me some food yesterday has done that all around her road.
What affect do you think this whole thing has on mental health?
Marissa: I was having a think about this and I think if you’re putting it specifically in the context of MS. If you have MS you're constantly living with this fear of the unknown, I think that's something that no matter what your symptoms are, everyone with MS shares. This inability to understand what the condition is going to do to you. So when I was thinking about people's mental health, I was thinking people with MS are pretty well versed in that and worrying about the unknown elements of an illness. But for me, I think it's more about being classed as one of the more vulnerable in society. I mean I'm nowhere near old enough to being 70+, when you're older you're more aware of being vulnerable when it comes to illnesses, but all of a sudden I'm classed as being one of the most vulnerable and I think that has a huge impact on your mental health.
It's great that people are thinking about people with MS and MND and other conditions but it really brings with it a lot of anxiety as you're put on high alert constantly. Also people being very worried about you can cause anxiety. Currently, bless my mum, is phoning me often during the day and I'm being told by people 'No I don't want you doing this, I don't want you doing that' and I think that also has an impact on your mental health. But I think it's pretty unavoidable and I think everyone's feeling quite similar.
I think it's important to limit your social media intake and reading the news. I now only read it in the morning and the evening. Whereas before I was checking in all day, which isn’t the best thing for your mental health at this point in time.
Helena: When we had the Swine Flu scare back in 2009/2010, I was at home with a newborn baby and I was just terrified. I would not let anyone come into the house to see me, I wouldn't let my mum come from Sweden to visit. Anxiety does weird things to your mind and anxiety builds when you constantly watch the news. Do you have any other tips to give someone with MS to cope during this time?
Marissa: It's just reiterating the points that we’ve already made, nutrition and wellbeing have such an impact on your MS no matter if it's advanced or newly diagnosed. So try and keep a bit of a routine. If you’re able to, go outside. Remember to drink water and look after yourself. Make sure you stay really healthy, so that if you do end up catching something, your immune system has the best possible chance of fighting it off.
Staying in touch with other people with MS, use the MS Trust Facebook group to voice your concerns, because nobody understands what it feels like unless they've got the condition. Don't be afraid to ask people to help you, or to ask them to be more hygienic when they're dropping things off.
If you have a partner, don't be scared to say, sorry but you can't sleep in here anymore, it's your health first and I think that's the most important thing. Try and alleviate as much stress as possible, I don't know about you but when I'm stressed my symptoms go off the chart. There's so many good meditation apps which can help you to relax. I've also been doing a lot of journaling which has been really helpful for me to get everything out and make sure I have a good night sleep.
Also make sure you put any questions you have to your healthcare professionals. I've seen a lot of false information online, so before you get scared make sure you have the correct information.
Helena: It’s been lovely chatting to you Marissa, looking forward to seeing you when we’re back in the office!
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