How CBT helps me cope with my emotions and secondary progressive MS

Wed 12 June 2024

Fiona Blades

When Fiona started to struggle with her emotions she reached out and got some help. With the help of a CBT therapist she’s learnt tools and strategies to help her deal with the bad days.

I was first diagnosed with relapsing remitting MS when I was 33, I'm now 59.

Sadly, I wasn't told in the usual way. I didn't find out until I applied for life insurance and was advised to refer back to my doctor.  I made an appointment and my GP said, very matter of fact, “I told them about your MS.” It was a totally devastating discussion as no one had ever mentioned it to me.

After a long-winded battle and a second opinion I got the same diagnosis.

After putting a formal complaint in against that GP surgery, I found out more. They’d taken a ‘parental decision’ to keep it from me as the stress might trigger an attack! Yes, this really happened.

I had absolutely no emotional support from any outside authority but wonderful support from my family. Once we all got our head around the diagnosis and the appalling way I'd been treated.

Read what you should expect after an MS diagnosis

The progression of my MS started to affect my daily life

MS for the best part of my life has been quite kind to me. I’ve had the odd spells of numbness, pins and needles, extreme tiredness and bowel issues. I lived my life as anyone that didn't have MS. 

Fast forward to when I was 52 and my consultant said I had progressed to secondary progressive MS. I sort of thought I had, so it wasn't a huge surprise. But it still wasn’t something I wanted to really accept. I was gutted to have it confirmed.

I knew my body wasn't doing what I wanted it to and I knew I wasn't having relapses.

I had a steady deterioration of my symptoms and new ones got chucked in, just to keep me on my toes. I always hoped there might be another reason my body was failing me, but it was the MS.

But if I'm honest I accepted it well really at first. "It is what it is" has always been my moto. It won't beat me. I again carried on quite unphased by the progression. I could still do quite a bit and I'd modify what I couldn't.

It only really started to affect my emotions when I started to get more and more limitations on what I could do in my daily life. It was affecting my social life and it became more difficult to keep up with my grandkids.

As the limitations took hold, I got more and more depressed, angry and frustrated that me, as I know myself, disappeared. I'd always been a loud, crazy, life and soul of the party type. Once my mobility started to change and I didn't feel safe without aids, I stepped back from me and let MS beat me.

I found it really hard to pick myself up and find a positive way to move forward. If I'm honest, I’m still struggling with it all.

Struggling with my emotions

I fought with myself, inside my head. I told myself that I am still quite lucky! But no matter how much I tried to remain positive, I couldn't. This in itself really annoyed my inner self. I had for the most part, of over nearly 30 years of living with MS, been SO positive.

If I'm honest I'm not really sure exactly when the change happened. I think it started with the progression to secondary progressive MS.

I found myself thinking I’d rather have cancer, have treatment and either live or die. My messed up mind preferred the idea of that to the slow deterioration of my MS. Ridiculous.

Instead of dealing with my emotions, things festered and took over. In 2022 I finally reached out and asked for help. I've known Claire, my MS nurse, for as long as I've had MS and she's wonderful.

I spoke with her and said I was really struggling mentally with my emotions. And although I had absolutely no intentions of hurting myself, I was starting to think what's the point in being here. I hated seeing the deterioration in myself and I just was so full of self-loathing, pity, anger and so much more.

She gave me a contact telephone number for mental health services. I then spoke with a lady called Carly, who asked me a set of questions. And said she'd be happy to offer me CBT (cognitive behavioural therapy) instead of traditional counselling.

CBT helped me retrain my mindset

The CBT was amazing, as was Carly. I had 20 sessions, which is more than most people can get. I was extremely lucky and grateful for it.

It's certainly been a huge help in trying to retrain my mindset. It hasn’t eradicated my feelings completely but it’s definitely made me rethink my thought process.

CBT has been like an awakening in me. It gave me some coping tools and has helped me lots.

The good thing is that you can use the tools for the long haul. So hopefully, I will regain more positivity.

During the CBT I had a bad fall and this reiterated my fears of my condition deteriorating. It made me scared to go out on my own, although I pushed myself to go out. CBT therapy was a huge help to talk this through.

It’s been an extremely difficult few years

MS is such a complex condition. Although everyone is different, I believe a lot of us suffer with our mental health.

I sound all doom and gloom, which again isn't my personality, but I’m being honest.

I think based on how I look, people don’t know how I feel inside.

I see changes happening regularly now with the progressive MS. It’s hard to accept, even with the help of the CBT.

But I haven’t gone back to the place I was before. And half of the time I am able to use the CBT strategies to help make bad days better.

One thing I’ve found since the CBT ended is that it can be hard to maintain it. If I need it though, I can get a debrief to see if I need a bit more therapy.

What else helps my mental health

I’m very lucky to have friends that I talk to and a husband. My best friend from when I was 19 years old also has a progressive illness. We’re each other’s sounding blocks. I can sit and talk to her for an hour and I feel a million times better.

Find out about support and community if you live with MS

My bowel issues have played havoc on my mental health. I get extreme constipation but when my bowels decide they want to empty, I have about 10 seconds to find the loo. This contributed to me not going out as much, for fear of an accident. I can honestly say the accidents I've had have been horrendous.

Getting help with my bowels has helped my mental health.

An incontinence nurse introduced me to a personal home irrigation system and laxatives and my bowels have improved lots. Now I feel much more confident going out.

I love to go for a walk and swimming. I can’t walk far now, but do get about using my crutch or if I need to go far, my mobility scooter.

I got the opportunity to have hydro sessions at our local hospital. It was eight sessions once or twice a week. This was absolutely the best thing I've done in years and prompted me to join the gym. I’ve started walking in a pool at the gym. This really lifts my mood, as my body is weightless and I feel less disabled. I’m also hoping it might help strengthen my legs.

I still enjoy my life. I have seven of the most wonderful grandkids and I will continue to try and be my happiest self for them. Hopefully, with the help of CBT, I will slowly find a way.

If anyone out there is suffering, please reach out and get some help. It really is worth it. 

You're not alone

Our MS Helpline can give you emotional support. Call 0808 800 8000 or email [email protected]. We’re here Monday to Friday, 9am to 7pm except bank holidays.

You can also can call Samaritans 24 hours a day from any phone, on 116 123

Find out about other ways to get emotional support