So I went to a neurologist last Tuesday morning and was diagnosed with multiple sclerosis. I think within time I will forget how this week felt so here it is.
Tuesday was awful I cried a lot and I remember thinking that it started raining just after I got into the car and it felt like everyone was crying with me. I got myself home, I was alone as I had known I was going to be upset and didn’t want anyone else there. I had people I had to tell, I told my boyfriend, my mum and my brother. Then it felt like I hit a wall I didn’t want to tell anyone else. A friend I’ve been friends with for years asked how my appointment was so I told her too.
I had been given the full day off work and I needed it. My world was turned upside down and I didn’t know where to start. I’m waiting for a referral to a local MS clinic. But what do I do in the mean time? Just sit and wait? I thought about changing my diet, I thought about exercising, giving up work, going part time, emigrating to where had the best treatment. I must have had every thought, along with why me.
I pulled myself together and spent most of the day and late evening looking into support groups in my local area and online. I fell asleep early by about 9pm.
Wednesday – I woke up feeling ready to fight this. I would do whatever I needed to do to get through it. I headed off for a day at work. By late morning a colleague asked how things were and I told her. Apart from that I didn’t say to anyone else. I had agreed I would speak to my manager about the appointment around lunch time, so I went along and explained what was going on and that I really didn’t know what was going to help me just now.
By the end of the working day I was shattered. I just wanted to sleep but I couldn’t I still had loads to do. And everything seemed to go wrong. When I got home I didn’t stop, tidying, dinner etc. Just getting things organised for the children that night. Then it hit me how was I going to do this healthy eating and exercise when I couldn’t get a minute to myself until after they went to bed.
I got everything under control and was happy with myself, prepared something for dinner then my youngest asked to go to the toilet. I went to help him and when I came back the dog had ate some of our dinner! This was it, this was my breaking point, I was giving up! I felt like I was crumbling, I couldn’t cope with this latest blow I’d been given. But with children I couldn’t stop, I had to keep going. So I ordered food in and waited for it to arrive. The guilt I felt was horrible I was meant to be eating healthier! I was meant to be going gluten, wheat, dairy and sugar free. And I had just ordered pizza and fried food to go with it!
I spoke to my boyfriend honestly that night about how crap I felt about everything. Then went to bed and I lay staring not able to sleep.
Thursday – working from home, struggled most of the day to get things done. Either distracted or feeling exhausted. Really struggling to know if I should be at work or not just now. Didn’t really get time to look up much about MS, which might be a good thing. Today I’ve felt like my hands are stiff and generally ache not sure if this is in my mind though.
Friday – I didn’t sleep well and I had been up with the boys through the night. I felt exhausted. I had arranged to see my manager around lunch time but by 9.30 I knew I wasn’t coping with being back at work. I went along to see my manager and we chatted. I was told to head home and not worry about what was going on at work. I went back to work and a girl I’m friends with asked how things were going. I couldn’t help it I told her through tears what was going on. I left work about 1 and went straight to me GP, I was told there were no appointments until the next Friday. I had suspected this and instead of passing on a long message for the receptionist I had written it down. I passed it to her and asked her to read it and let me know if it made sense. She looked at it and replied “oh I’ll find you an appointment”. I ended up with a phone appointment, the GP was great and was surprised that I had been back to work while I still had optic neuritis. But said she completely agreed I shouldn’t be working just now. I just can’t cope with that pressure too.
Saturday and Sunday passed okay “it” was spoken about and my boys saw there Dad for the first time in a few weeks. Just wish that hadn’t added extra pressure with my ex talking in my eldest’s ear.
Monday – I’m off work again, but there are reports that I still need to submit. So I sit down to do them and panic fills me, I feel the pressure that I need to get them done. And I suddenly feel like I can’t cope. But I get the work done and I’m ready to continue.
I need to to digest everything that has changed recently, with a diagnosis of MS just being the latest thing. I had requested information from the MS society and it arrived today. I’ve got to admit I feel like I’m eyeing up this parcel suspiciously and putting off opening it. As if opening it means it’s real and it’s going to make everything worse. I ordered it. So I know exactly what it is and it’s meant to help me. (I did open it later but I haven’t actually read it)
I decided to walk the dog myself today. I had no idea I had so much anxiety building up in me. I used to run with the dog and on a treadmill. I would do between 4-5k and I only stopped in the winter because it was too cold and I wasn’t enjoying it. But now I’m walking the dog and the weather is glorious. But I’m terrified that my MS is going to do something and I’m out here alone. Everytime I scuff my foot I think about how my symptoms have been there. I’ve just not seen them.
I come back from my walk and sit down, I realise that again my thighs are tingling, this happens everytime I walk any distance. It’s just annoying and nothing more. I ask Mr google if this is a MS sign. Of course it is.