Hi, my name is Claire and I'm a thirty-something female living in London in the UK. Welcome to my blog, Through the Fibro Fog!
Over the past seven years, my life has changed rather dramatically and I have gone from being fairly well to having a long list of diagnosed medical conditions and the symptoms that come along with them. For greater detail of my diagnosis story, please see the separate post here, but I wanted to introduce myself with a little about me here as well.
Back when everything changed so dramatically, I was working full-time and saving up a deposit to buy a flat. I was fairly fit, going to the gym or running outside several times a week, and spending my evenings and weekends seeing friends and family. I loved food, and eating out, and was always interested in fashion. Shopping was definitely a favourite past-time!
Then I had a planned medical procedure to help reduce the symptoms of Raynauds syndrome, a condition that I have had since childhood. I reacted badly to the infusion and my life turned upside down overnight. The side-effects I experienced from the procedure didn’t stop, and for months I went back and forth to my GP trying to work out the cause of my dizziness, nausea and fatigue.
Nearly a year later, and after countless appointments with specialists, I was diagnosed with vestibular migraine / migraine associated vertigo. The symptoms were debilitating, and after a while I also started to have head pain, feel light-headed and even more significant fatigue.
After having quite a lot of time off work due to my symptoms, I was eventually ‘let go’ from that position. It was extremely hard to stop working in a job that I enjoyed and that I had trained very hard to do. I fell into quite a low period in my life, with my symptoms much increased. Some days I barely left my bed due to the dizziness, or would spend hours working up the courage to walk around the block.
Related post: A day in the life with vestibular migraine
As time went on, more symptoms started to appear, and over the years I have been diagnosed with:
- PoTS / dysautonomia
- Hypermobile Ehlers-Danlos syndrome
- Mast cell activation syndrome (MCAS)
- Interstitial cystitis
- 'Classic' and vestibular migraine
- Exploding head syndrome
I have seen more specialist doctors than I care to recall, and had many tests and a few surgeries, some of which were very stressful and invasive. I feel as though I have visited most of the hospitals in London at some point!
Related post: Living with PoTS / dysautonomia
Related post: Living with MCAS
Today I have ups and downs with my symptoms. Some days I can almost forget I am unwell, although these are in the minority. Other days the fatigue, pain, headaches and dizziness are more overwhelming and I have to be at home, having a more ‘low-key’ day. My migraine attacks are more under control than they ever have been, which I put down to Botox treatment and diet. On the other hand, my MCAS symptoms are more problematic.
I take prescribed medication and definitely get a lot of help from various products that are designed to help manage symptoms for those with chronic illness such as an ice towel, Migraine Shields (migraine glasses), Blisslets anti-nausea bands and my YuYu bottle.
Related post: 5 positive aspects of Botox for chronic migraine
It has been a long, hard and bumpy road to get to this point. I can attribute the improvements to medication and physiotherapy, but also lifestyle changes.
Over the past few years, exercise has become both a form of treatment for me, but also a way to switch off and have time to myself.
I started using pedals at home and walking just five or ten minutes, and then progressed to longer walks and now to a couple of 20 minute runs several times a week. Saying that, I very much listen to my body and if I am particularly tired or other symptoms are flaring up then running has to wait until a better day.
Exercise is very individual for each person depending upon their symptoms and conditions, so this is just what works for me.
Diet has also been hugely important, and I now follow a low histamine diet on the advice of my doctors and a dietitian due to having MCAS and likely histamine intolerance also.
If you have been advised to follow the SIGHI list by your medical team, then you may like to know that here is a growing list of low histamine recipes on this blog, with ideas for breakfast, lunch and dinner as well as snacks and some sweet treats.
I hope the recipes show that following a more restrictive diet doesn't have to mean boring and bland food!
Related posts: Low histamine recipes collection
Stress management and rest
I have focused on trying to reduce stress levels. I am definitely a slightly ‘stressy’ person at times, and this has been, in some ways, the most difficult area to tackle. Putting things into perspective helps a lot, as does engaging in more calming activities. It doesn’t have to be meditation, but reading a good book, watching a film or doing a short yoga practice or some stretches.
All of these things have helped me get to this point. It isn’t to say that I am ‘cured’ because that will never happen. But it is to say that I can now function to a much better ability than I did several years ago. Hopefully things will either stay the same or improve a little more in the future.
The chronic illness community
One of the best things I did in my chronic illness journey was to connect with others living with the same or similar conditions as to myself who understand what daily life really is. Through my Instagram page I have found so many people who are fun, inspiring and so supportive. I definitely recommend finding some friends to chat to!
I hope that you enjoy this blog, and my posts are helpful. Please do always feel free to comment on the posts as to what has helped you, or you would like to see here. It's great when we can help each navigate chronic illness and live more positive lives!