Sjögren’s: An act of kindness

“No act of kindness, no matter how small, is ever wasted”-Aesop

It’s been a while since iv’e been to the hairdressers, iv’e let myself go a little and been feeling a little broke.

I nearly cancelled as I was feeling so rock bottom after the Sjörgren’s meeting. Iv’e been going to the same hairdressers for the last 20 years so I know my hairdresser well. As always a warm welcome and Karen preceded to ask how I had been. I just said that I was feeling a little tearful so if she didn’t mind I didn’t want to talk about it.

I had been aware that over the last few months my hair had been falling out, I had wanted to ask Karen what she thought but was a little afraid of the truth. Karen beat me to it and very gently asked “have you noticed any difference with you hair?” at which point I burst into tears, the tears just streamed down my face. How embarrassing! At which point Karen was so sweet, she listened most of all.

She then asked when I was free next as she wanted to book me in to get my hair coloured (which was much needed). I replied things were a little financially tough at the moment. “No this is my treat, I want to do something for you.”

Karen also didn’t charge me for my haircut and gifted me some hair loss treatment (Nioxin hair/scalp treatment) to take home with me and the following week Judith the colour technician was just as sensitive and lovely and got rid of the grey.

Karen will never know how much of a turning point her compassion and kindness was for me, she saw my rock bottom and picked me up!

Thank you Karen


Sjögren’s meeting sent me into meltdown

I’ve been on Hydroxychloroquine for 3 months now, clearly kicking in alongside all the other life changes i’m making.

The BSSA had a large seminar running up in London but my specialist was holding a pre meeting with BSSA before the main event. I had been invited to come along.

I was in two minds as to wether I should go, I was feeling pretty good and was concerned that if the other people in the room were not in the same positive state of mind it might bring me down.

I decided to go, I thought I would arrive just before the meeting started so I didn’t get caught up in conversation and could just listen to the facts from the speakers.

I arrived at the carpark of the hospital to make the observation that there seemed to be a lot of older people arriving, I thought surely they are not all going to the same meeting, they were. Nothing wrong with this but i suppose I was expecting everyone to be around the same age as me.

I went into the meeting and sat myself on the end of the aisle to protect myself from being sat next to someone I didn’t want to be. (I have a knack of sitting next to the person who wants to tell me there life story). All the seats were taken excelpt the one next to me. A very fragile looking lady came in and sat next to me, we introduced ourselves.

She then looked at my eyes and said”how come your eyes look so good?” And then proceeded to tell me the most awful story about hers, she then preceded to tell me everything else that was wrong, I was shocked she looked really unwell. The girl behind me, who was younger than me talked about her emergency visits to the hospital. Although she was positive in the way she spoke, I was taken aback. The meeting then started and although most of it was really informative there were a few people that showed me  how challenging this condition can be.

I did ask the question how quickly could the Hydroxychloroquine  could kick in as I was only two months in and already feeling the benefits. She said that this was possible and that the younger you are the quicker your body can respond to it, happy days! To be honest I was feeling pretty pleased with myself as to how well I was feeling. I realise now that my challenges to date have not been as great as others.

I remember looking around the room thinking, I haven’t got what you’ve got! I couldn’t get out the room quick enough when the meeting had finished.

I got home and I felt fine, I felt quite disconnected from it. It wasn’t until a few days later I had a big melt down. The reality struck home that actually I did have what they had and does this mean that this would be my future? And being fairly young (Okay i’m 48 but thats young in my eyes) would my condition really deteriorate by the time I was in my 60’s.

I cried for weeks, I felt scared, angry and depressed!

Don’t get me wrong I think these meetings are invaluable for most people but it just wasn’t for me.

It took a kind gesture to turn it around….

Sjögren’s, taking control back!

Well that’s enough of feeling sorry for myself, I need to get some quality of life back. I need to control it rather than it controlling me! (Rewinding to February 2016)

The specialist has started me on Hydroxychloroquine but she said it may well take up to 6 months to kick in and that’s if it works for me, a little scary as I need this to work!

She said being a personal trainer it should stand me in good stead with this condition as I have an understanding of the body and understand the importance of exercise and nutrition. I hear her point but I can’t help feeling it’s a cruel hand to be dealt when this is my work and it’s going to make it tough.

However I do appreciate I have an understanding of what I need to do to give myself the best chance of controlling this condition.

Before being struck down with Sjogren’s I could do 20 plus perfect press ups to overnight not being able to do one due to the pain and weakness. As I didn’t understand what was going on I foolishly decided not to do anything for six months. After getting the ok from the specialist that actually exercise would help my condition, I got back to it.

Not as easy as I thought it would be, I would normally beast myself for an hour and feel energised and satisfied afterwards. I had to take my training back to basics, not only did every movement hurt but I could fall asleep whilst training, I would start yawning 10 minutes in. Not only that I would need to save some energy so that I could work after. Not an easy balance to keep! I decided to break it down into bitesize sessions 10 minutes a day, for the first time in my life I actually hate training but I need to keep it going religiously,its got to get easier….

I have always eaten pretty well but realise I need to step it up. I am very much a carnivore my favourite being steak. I would have this once a week at least. Not great for my kidney function though, so this was one of the first things to go. (I still have it as a treat occasionally).

Oily fish is the way to go, so i’m told. I now have oily fish three times a week, i’m not really a fan but I take it like medicine.

I also went to see a Kinesiologist which was very helpful, she told me I needed to give up diary which wasn’t a huge surprise to me. Dairy is very inflammatory and makes the body produce more phlegm. Having had years of suffering with my sinuses I really should have done this sooner.

The biggest change I made was to cut out sugar, difficult to start with but now comes naturally. Sugar in my book is an evil, for so many reasons, obesity and inflammation in the body. If i’m bad (which I am sometimes, I’m only human) my pain increases.

I have also reduced wheat, not that I am intolerant to it but i feel better for not having it.

So what do I eat….Fresh whole food, nothing out of a packet. I will cover diet in a separate blog.

I also take supplements, Vitamin D in very high dose 5000iu, Omega 3 and B Complex and magnesium.

Fatigue is my biggest battle on some level I can just put up with the pain. I’ve had to learn to say “no”. If I don’t I realise there will be a price to pay. So socially life has become a lot quieter (boring if i’m honest). I hope, as I get a better handle on this that this will change…

What has been really important in taking back control has been sorting my head out, I grieve the loss of the person I used to be. So I see a cognitive hypnotherapist, she has been invaluable! When I lose control of my head everything else seems to fall apart. My word of caution would be though is to seek out a good one.

I have to say with making these changes I am feeling so much better but still a way to go.