Coronavirus (Covid-19)

Advice for people with diabetes and their families

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Emotions

Diabetes doesn’t just affect you physically, it can affect you emotionally too. With so much to think about, you may sometimes feel overwhelmed. But our stories show whatever you're feeling you're not alone — and what may help. 

Shannon with her daughter on her shoulders, laughing in the countryside

ShannonDiagnosed with type 1 while 28 weeks pregnant with daughter Bronwen

Managing with a baby

When my daughter Bronwen was about eight months old, I saw a clinical psychologist. I was advised to do that because of the trauma that could be caused by everything I had experienced. Quite often people with severe morning sickness can develop post-traumatic stress disorder, and it’s the same with a chronic condition like type 1 diabetes.

I’m grateful that help was available, but I found it so hard getting to the hospital appointment with a small baby while trying to manage my sugars. Having to be anywhere for a certain time was just awful. It didn’t really help me at that time.

I had diabetes nurses on call, which I still have now. Luckily I did manage my diabetes quite well. There is support out there if you want it or need it. For me, it was a case of just getting on with it.

At my health trust, if you have a chronic condition, you can self-refer for emotional or mental health help. You just call them up and you’ll get an appointment. I feel like I’m too busy at the moment, but it’s great to know it’s there if I want to take it. Before, you had to wait to see your consultant for a referral. When that’s the case, I think it can be a barrier to seeking help, because it’s often very much a case of how you feel on the day you see your consultant. If you think you’re not too bad, you won’t ask for help. 

I think self-referral is really good, but I think there’s a gap for mental wellbeing, because not everyone who has concerns that would affect them mentally would need a clinical psychologist. You might just need a counsellor or a peer to talk to. 

Read Shannon's complete story
Jayne smiling into the camera

JayneDiagnosed with type 1 diabetes aged 30

Recovering from surgery

I was in Kings hospital for nearly three months. I stayed in a little side room, and my husband could only visit on weekends because he was working. After a while I had to ask the nurses to leave the door open because I began to feel claustrophobic. 

When I got home after being discharged in December, I noticed that I was beginning to feel more anxious and depressed. I thought I had coped pretty well with everything going on in my life up until that point; I’d lost my sight in left eye and had a kidney and pancreas transplant whilst dealing with my foot problems too, but sitting at home took its toll on my emotions

I wasn’t sure how long I’d have to be in the plaster, and not being able to exercise was hard. I used to enjoy going on walks and hikes with my husband, but that wasn’t possible anymore. And I could feel myself putting on more weight because I couldn’t move around much. I spoke to my doctor about how I was feeling and I was given anti-depressants at the beginning of this year.

Coping during the coronavirus pandemic

I still feel the anxiety creeping in now and then, but I am trying to stay positive. The past few months have actually been a nice change for me. Although I have been shielding because of coronavirus, my husband has been working from home and it means I’ve got company, even if he is in another room. 

The weather has also been quite good, especially over the last few months, so I’ve been able to get out into the garden and enjoy sitting outside. And lots of my neighbours are around too, so it’s been nice to speak to people I usually wouldn’t get a chance to see.  

Looking forward

I went into hospital for my appointment a few weeks ago and got to see the new shoes I’ll need to wear once my feet are out of plaster. I was measured for them a while ago, but because of the virus this was my first time seeing them. They’re a bit chunkier than I expected, but I’m looking forward to getting them on and starting to move again. I want to be up and about by Christmas, that’s my target.

Read Jayne's complete story
Nicole Smiling

Nicola PflugDiagnosed at 14

Mental health and diabetes

I’ve always felt there was very little emotional support for people with diabetes. I even wrote to Vaughan Gething, the Minister for Health and Social Services, to ask for his help. I have been diagnosed with mild depression, which stemmed from the problems I’ve had with my eyes, as well as high diabetes distress.  

When the lockdown began, it took me back to the days when I was stuck in the house because of my retinopathy, and was too frightened to go out. Since coronavirus, I can feel my anxiety levels rising every time I go to the shops. I worry about whether people have washed their hands and I’m always aware of how close they are to me. I’m better in larger supermarkets but smaller shops, like the one around the corner from my house, I’ve struggled with more. It’s the same if I go and queue to collect my prescription at the pharmacy.

I’ve found that people can be quite judgemental. If I go to the shops then I’ll go with my husband. One day I heard someone say, “Why does it take two people to shop?” I wanted to turn around and explain that what’s wrong with me you can’t see and there was a reason I wasn’t shopping alone. 

I was also concerned there would be delays to my next eye appointment. I hadn’t been seen since December and was worried I would end up going a year without being checked by the specialist. I was left too long by the hospital before and that’s how my retinopathy started. However, due to the severity of the problems I’ve had with my eyes, I got to see my doctor and there has been no new growth. So that was a relief, as it had really been adding to my anxiety.

Staying emotionally well during the coronavirus pandemic

I was determined that I didn’t want to take 20 steps backwards and return to the place I was in when my retinopathy was bad, so I decided to put things in place to help me manage my anxiety during this stressful time.

I make sure I’m connecting with my family and friends all the time and FaceTime has been a great way to do this. If you know your friend is sat at home with her kids then then there’s no excuse why you can’t give her a call for 10 minutes – you’ve got to keep up that contact. 

Although social media can have its downsides, I follow a lot of type 1 groups and pages, and if you’re struggling you can post something online. If people say something negative they get shot down quickly, and I find there are so many people who will say nice things. I think you need to drill it into your mind that you can’t control what other people post and what their opinions are, so skim past the negative. My wedding was days before lockdown, so I’ve been posting loads of my wedding photos up on Facebook, which should be something nice for people to see on their feeds. 

I’ve been trying to keep active, so I’ve been doing the Joe Wicks workouts every other day. I thought I was a spritely eight year old but I hurt for days afterwards, so I needed to ease in gradually – and I have to be careful with bending because of my eyes. 

Read Nicola Pflug's complete story
Karen smiling

KarenDiagnosed with type 1 at four years old

Staying positive

I’m married, I have two sons, and I work three days a week in an NHS admin role. I used to get stressed that my gastroparesis would mean having to take time off work. The stress, in turn, affects the gastroparesis. I eventually got to the point where I thought, ‘I’ve got this condition. I didn’t ask for it. There’s nothing I can do about it.’ I just had to accept it! Once I realised that, I stopped getting so stressed. Now, I haven’t had to take sick leave for nearly two years. I know it will flare up, I will end up in hospital every so often, but I just have to ride it out.

Having gastroparesis puts a lot of pressure on your marriage and your life. I’d be throwing up by my husband still had to go to work and I had to get the kids to school. It was hard at the time. My kids are older now, nearly 17 and 19. Now that they can look after themselves, I don’t stress as much. It was harder when they were younger.

As I’m getting older, I think I appreciate life more. I realise my situation might be a bit bad at times, but it’s not the end of the world.

Gastroparesis has been really tough, but having diabetes has never bothered me. Obviously I’d rather not have it, but it’s never affected my mental health. It’s just something that I’ve got and I feel that there are other people out there with worse illnesses than diabetes. My view is that you can’t live like it’s the end of the world. I’ve got diabetes, I just have to suck it up.

Read Karen's complete story
Jon-type1

Jon PeachDiagnosed with type 1 diabetes aged five

Challenges during Covid-19

Daily life is quite different at the moment. Alongside my wife, we’re currently home schooling our little boy. He’s only five so a lot of it is learning through play. We had tears and tantrums the other day because he lost a game of snakes and ladders!

I’ve been working from home since Boris Johnson’s announcement on 16th March, where he advised people with underlying health conditions to avoid social contact. I told my school’s headteacher that I needed to make the decision to stay at home, which was fully supported. When everything came out about shielding I was unsure as to what I was supposed to be doing, but the school said they don’t expect to see me for the foreseeable future. It was really nice to get that reassurance. I have friends with diabetes who I know are having problems. They’re either being messed around by their employers or not being given the support they need.

I don’t think there has been clear enough guidelines from the government as to what people with diabetes should be doing in terms of employment. This then leaves bosses and companies open to forcing you to make the choice as an individual, which could potentially put your health at risk. Do you say ‘I won’t go to work because I’m worried and I know the right thing to do is stay away from everyone, because of the impact this could have?’ However, people have got mortgages to pay.  

For me, the government should be providing guidance and saying if you suffer with certain underlying health conditions not covered by the shielding letters, you should not be mixing, you should work from home, and then ensuring your employer is doing what they can to support you with this. 

I’m quite worried about going back to work. For me, I don’t know how I could teach sports given the close proximity people would be in. In school changing rooms we have between 30 and 40 students. If you had to keep two metres apart, you would fit eight students in a changing room at once. And what about handling equipment? I’m not sure what sport you can do with a class full of students where it can be safe for them and the staff. 

Adjusting to change

As a head of year, I very much have a pastoral role and now more than ever it’s so important for me to be supporting students and their families. I went through a phase of teaching things like the components of fitness and training, but now parents have said they will use that time to get their kids to do some activity. The students are telling me what they’ve been doing, which is great to hear. Maybe it’s a walk with their family or 20 minutes on their trampoline.

At the moment, it’s all about adapting and the most important thing is for families to keep each other safe, and spend time together. 

Read Jon Peach's complete story
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