Hello and welcome to the second instalment of Shining The Spotlight on Chronic Illness & Disability. A series of posts where guest bloggers answer questions about their illness or disability. In the hope that we can shine a light on these illnesses and disabilities to raise awareness and let people see that because they are mostly invisible illnesses & disabilities, that they are in fact real. Today’s Q&A is from Jenny. Jenny blogs over at Tripping Through Treacle.
Introduce yourself and tell us a bit about you?
Hi! I’m Jenny and am 40 years old. I am married with two kids, a boy and a girl and live in the East of England. Until recently, I worked as a Paediatric Speech and Language Therapist – I absolutely loved my job! I also enjoy food, reading, coffee, reading interiors blogs and crochet.
Chronic illness(es)/disabilities I have?
I have Multiple Sclerosis. Initially, I was diagnosed with the relapsing-remitting type (where you have periods of flares which partially or fully get better) but over the last 6 years or so, my MS has turned progressive. This means that I have more permanent symptoms which are slowly getting worse. MS affects any of your nerves (motor and sensory). I currently have left-sided weakness and spasticity and walk using crutches. I also use a mobility scooter. I also have significant fatigue and word-finding problems becaome noticeable if I am tired.
My symptoms/condition began?
I had my first MS symptom (a blank spot in my vision which fully resolved) at age 13. This was called Optic Neuritis. However, I wasn’t diagnosed with MS until I was 15, when both of my legs went numb for a few days. Looking back, I had a few symptoms as a child that I can now attribute to my MS – the feeling of water running down my back when there was nothing there, for example. Whilst I was a teen, I had several periods of ‘relapse’, but my body always went back to normal after the attacks and I don’t remember feeling any other symptoms day to day.
My diagnosis process was?
My diagnosis ended up being pretty easy and straight forward I think, especially whenI speak to other Msers who have to wait for a diagnosis. This is because relapses can appear quite different to one another (e.g. affecting different parts of the body in different ways). I think because my dad was a GP and my mum a physitherapist, they knew something wasn’t right, suspected MS (though didn’t tell me!) and pushed for the tests to check. As such, I went into hospital for a few days and had tests such as an MRI scan which clearly showed the damaged associated with MS. I did not have a lumber pucture, which I am pleased about. Many Msers get one as part of the diagnosis.
The hardest part of living with my illness/disabilities is?
The changes that it has imposed on my life; I am now not able to work and it was such a big part of me. It made me feel competent and confident. I am also a disabled mum – my kids are brilliant, but I am aware that there is so much that I can’t do with them, such as playing football or going on the trampoline, that they would like me to. I can no longer be the spontaneous person who could wander around cities exploring the sights with my husband – fatigue gets in the way plus many places are still inaccessible to me.
People assume that?
I am happier now that that I have stopped working. It IS better for me physically but, emotionally, I don’t feel it is. That is part of the reason why I blog, to stay mentally active and to feel like I am helping others. Also, I get a lot of comments on how nice it must be to nap every day. I do love my sleep but it becomes frustrating when it is a necessity rather than a choice.
A typical day for me involves?
Getting up at 7:30 to help the children get ready for school. Before getting up, I need to spend a few minutes stretching my legs out in bed due to the pain and spasticityy that build up over night. Once the kids are ready for school, I either take them in my car (it is walkable for the kids,but it takes more of my energy to organise the mobility scooter than just hop in the car outside the house) or my husband walks them.
In the morning, I try to do a bit of adapted yoga to stretch my body out and a bit of blogging. I have also started an online course which I have to do assignments for – it is hard to get organised and motivated for this, but I do try! The housework doesn’t stop, so I also try to intersperse a bit of tidying with sitting down.
I am lucky that my husband often works from home, so may make my lunch. During luch, I might watch an episode of whatever I am currently watching on Netflix, using a leg shiatsu massager whilst I do so, then I will go for my daily nap. I try and set my alarm for an hour or so, otherwise I might struggle to sleep at night! If I didn’t set my alarm, I would sleep for hours. I definitely need to nap to get through the rest of the day. I usually have my shower after my nap – until then, I tend to stay in my pyjamas!
After getting the kids from school, evenings are the same as they are for many parents, I’m sure. Homework, reading, games, tea and then the bed routine. My husband usually cooks. If not, I go for something ‘easy’ like pasta and a simple tomato sauce (or something I can bung in the oven!). By the time the kids are in bed, I’m ready for mine, so will usually read for a bit then sleep. A ‘good’ symptom night may mean that I can stay up and watch telly with my husband or maybe even go to the cinema or see friends for a couple of drinks. That is relatively rare, but I really enjoy it when I do. I have to time it though, as I know that I will pay for it for a few days after, in terms of increased symptoms and fatigue.
The one thing I cannot live without is?
Apart from family, I would say writing. Even if no one reads what I write, I feel like it helps me emotionally to deal with my MS day to day. I guess it means that I don’t ‘internalise’ my feelings as much and as I result I feel stronger emotionally at a time when it could all be too much.
Being ill/disabled has taught me?
Sounds cheesy, but I think that it has taught me that I am stronger than I realised. I have been through a lot of change over the past few years and I feel like I am still a good mum (the thing that I want to be most) regardless of that. Also, not to sweat the small stuff and to appreciate what you have whilst you have it!
What advice would I give someone recently diagnosed?
Just that a diagnosis of MS doesn’t mean that your life is over. Many people do not become progressive – there are treaments available now that weren’t there when I was diagnosed. Also, your life can be adapted to take into account your illness, it might not be exactly the same as it was before but it can be just as good, in a way that you never considered. For example, I can now see my kids more often than I could whilst I was working. I can still go on holiday and I have so many new friends that I have made through my MS, it is like I have a whole new chronic illness family!
My support system is?
My family – my husband and kids. They treat me just the same as they ever did, which is great, but they also know how to help when the going gets tough. I also receive so much support from my parents and in laws. I am really lucky to have them all live nearby and I know that I can rely on them for help with the kids if needed, or a lift to the hosptial if I need one. Also, my friends are fab – my MS has not got in the way, they are happy to adapt as needed and I know that I have a select few who I can really lean on.
If I had one day symptom/disability free I would?
Oh my goodness, that is such a great question! I would definitely use my body in any way that I could. I miss the feel of running so much and building up a sweat through exercise. So, running, a bodypump class then maybe out for lunch with friends, foregoing my nap. I would pick the kids up from school then take them to a trampoline park where we would all jump around. At night, I would go dancing with my friends.
One positive of having a chronic illness/disability is?
That my children are growing up to be caring and understanding individuals, who do not discriminate just because someone is different. I’d like to think that they would be like that anyway, but having a mum who has needs like I do means that they have had to deal with a lot more than a lot of other children their ages (10 and 8).
The spoonie/disability community has been?
An absolute lifesaver. Before I got involved with blogging and started using Twitter/Facebook/Instagram I knew no one with MS or another chronic illness. Now, through blogging and social media, I can chat to others who truly understand what it feels like to live with chronic illness; the challenges I face and the unpredictability of it. I have also learned so much about other illnesses that I newver knew of understood. I am really, really grateful for the online spoonie community and wish that I had become involved earlier!
A massive thank you to Jenny for answering the questions and telling us more about MS.
You can find Jenny on social media her accounts are listed below.