My Journey With CFS
Before I became unwell, I enjoyed life as a happily married woman with a wonderful husband and a career I loved working in a private school. We had a great social life as a couple and enjoyed many holidays abroad. Then I was blessed with a beautiful baby boy. I was fun loving, happy, healthy and active.
I started to feel extremely fatigued and my body would cease to work for me. I put it down to being a new mother and carried on the best I could, until I started to experience unbearable pain which resulted in my gallbladder being removed. I never recovered fully from it. I went on to have my second little boy, which was a happy time in my life but my life began to be very restricted. I had to cancel going out with friends and found everyday things hard to do. Eventually I was
diagnosed with depression and anxiety and was signed off work. I attended counselling and was left feeling hopeless.
After ten years of depression on and off, extreme fatigue, nerve pain, numbness, joint and muscle pain, going back and forth to chiropractors and wondering what was wrong with me I finally got diagnosed with Fibromyalgia by a rheumatologist. It was a relief to now know what was happening to me. The advice was to take medication and walk for fifteen minutes a day which I found impossible. My hours at work had to be dramatically dropped and I struggled to do anything on the other days. Again I felt hopeless, until one day my husband came home from work saying that he had been chatting to a lovely lady called Linda about my condition. She had given him information about Salus. I finally found a life line.
My Journey With CFS
Like many of our beneficiaries, Jane was an active person with a challenging career and busy home life when she became ill. Once she found SALUS, she fully embraced the support on offer, in particular the Nutrition expertise. This quickly began to make an enormous difference not only to her own life but to that of her family.
Just over a year ago I was struggling with teaching, a secondary school PE teacher who couldn’t even put the trampoline out never mind demonstrate moves. I was also teaching massage but I was hurting through fingers, wrists, elbows. Cold rugby pitches were awful places when everything was hurting and I could not get myself warm.
I also found more and more that I was not able to dress myself easily, I was collapsing in lessons, being driven home on multiple occasions. Reading and writing became challenging if I was over tired, the futon was where I spent many a night in order that I could give my husband a better night’s sleep. I was in pain and discomfort most nights and struggled to feel refreshed enough to get up in the morning.
A lot of this will resonate with a lot of people. I was determined that I would recover from this quickly and carrying on with teaching, being a wife and mum, running marathons and being fit and active. My body had other plans and realised a lot needed to change and mostly for the better.
“After being signed off work for a good long while my GP suggested Salus.
That one chance comment from her was, I believe, an integral part of me being the happier, healthier person I am today – on my road to recovery.”
My Journey With CFS
Judith’s family have been very much part of her recovery. SALUS encourages partners, friends and
relatives to come along to Support Groups and share the journey.
I first became ill in December 2006 with a normal seeming viral infection. That led to being hospitalised as I had problems with tachycardia, shortness of breath and tiredness. Various tests led to an initial diagnosis of cardiomyopathy. Six months later, another viral infection led to hospital again but still no diagnosis.
I was eventually diagnosed in December 2007 with ME/CFS, at which point I was unable to work due to extreme fatigue and pain. At the time my children were 17, 15 and 13 and I was used to doing the usual things; working, going to football matches every weekend as both boys played, outings with family, everything usually taken for granted. All this stopped when I became ill.
“Luckily my daughter, Becca, had just passed her driving test and she was brilliant, taking the boys places and all of them doing the supermarket shopping for me. They were all fantastic.”
At that time I was living in Sunderland and was offered help for ME by the support service there. This took the form of a self-management course. You were basically given tools to help you manage the condition as best you could. It was felt that you couldn’t recover, so this management was all that was offered.
My Journey With CFS
Julian is one of a number of beneficiaries who have developed ME/CFS type conditions after sustaining a head injury. He has written this article because he wanted to share with others the experiences he has gone through over the past six years and explain how SALUS has been so supportive to him.
I was mid 40s when I was struck on the head by a golf ball. I was in good health prior to the incident and had a progressive career as the Managing Director of an insurance company.
However, following the incident I have suffered from the following conditions:
- Headaches and migraines (particularly ‘ocular’ migraines)
- Shooting pains in my head
- I lost interest in life
- Extreme tiredness (I sleep on average 40 50% longer than before)
- Balance issues (I was diagnosed as having a damaged middle ear)
- Memory and concentration issues
- I do not deal with stress very well nowadays
- I have noticed a lot of muscular and joint issues
I underwent a year’s treatment for my balance issues which have much improved. This was daunting at the time as I had to visit several hospitals many of which were based in London. I used to feel spaced out and the whole thing was exhausting. However, I always remained positive that I would improve and would listen and act on the advice I was given.
I involved my GP in all of this process and she was extremely helpful. She did not know all the answers but was open with me and tried to find solutions. A key point that my GP made was that medicine still has huge amounts to learn about the brain (which I took to mean that I may not find out exactly what I am suffering from).
Following my treatments in London the tiredness, migraines and tinnitus symptoms still continued – my time at work was considerably reduced for at least 3 years. My doctor therefore referred me to the ME/CFS unit at Nuneaton hospital who diagnosed me with CFS. They provided me with a fact sheet and supportive suggestions which I again followed.
“It was at this time that a friend told me about the SALUS group. I read the SALUS leaflet and went onto the website.
It was great to know that there was a support group who cared about people having similar issues to myself.”
I started attending the King’s Heath group about 18 months ago and found the group extremely supportive in the following ways:
You can discuss conditions which people can relate to without judging you. This can either be on a group basis or one to one as you prefer.
We are offered suggestions to help improve our well-being. There is always an understanding that if we are concerned about any suggestion we speak to SALUS and then see our GP. Examples include meditation, yoga, diet, managing work life balance and exercise.
I have now taken yoga on a weekly basis and have completely revamped my diet. I now eat a fruit and vegetable based diet. Coffee is a no-no – I do admit to not always sticking to this but we all need a treat so don’t tell SALUS! After returning to full time work, after various consultations I decided to move to part time from 2015. This was to manage my tiredness and stress levels. I found this difficult at first as it was something I didn’t want to do but I now realise it was the right thing for me. Yes I do get very tired at work but I do have recovery time so on balance it works for me.
“In summary I would say find a GP that cares, remain positive, use your local SALUS support group
and heed the advice you are given. This may not completely cure you but I feel it has really helped me.”
My Journey with CFS
Cath, aged 45 from Sutton Coldfield led a busy challenging life, being divorced with three children and working as a teacher, with exhaustion and stress taking their toll and a diagnosis of Chronic Fatigue Syndrome in 2010 she could not see a way forward until a friend introduced her to Salus Fatigue Foundation and her journey towards recovery began.
Before developing CFS I led an active & healthy lifestyle bringing up three young children and working as a primary school teacher.
The onset of CFS began with a viral infection; this then led to symptoms including IBS, depression, debilitating fatigue, speech difficulty, joint pain and panic attacks.
This impacted my life with difficulty caring and providing for my children, work absence, needing a walking stick, taking medications with side effects (worsening symptoms of IBS), and creating social isolation from friends and family.
A big turning point came in 2011 when a friend took me along to a Salus Support Group as I needed someone to bring me along as I couldn’t drive!
I had seen a local newspaper article about Salus and was unsure about contacting them but once I had attended I was so inspired by the positive supportive environment and being with other people who understood exactly how I felt, my isolation ended. I began to make new friends.
“Cath was not able to string a sentence together when she came along to her first support group” (Ron, Salus)
In 2013 I started to attend education sessions helping me to make some positive changes with nutrition and pacing: very effective for me. Relaxation classes helped me to manage stress levels while Qigong sessions enabled me to slowly regain energy levels. Through Salus I have discovered natural approaches to managing and improving my condition.
“I thought the top of the mountain was just beyond the clouds but discovered it was in fact only Base Camp. After my initial disappointment I decided to pitch my tent and rest a while. When I sat back I could see exactly how far I had come and was overwhelmed by the realisation that the foot of the mountain, where my journey had begun, was no longer in sight. In that moment I understood why my back ached and my feet were sore. I also looked up towards the summit and visualised the amazing view that must await. There’s no telling how rocky the path or how long the journey but I know the view is spectacular! Enjoy your journey!” (Cath)
My Journey with CFS
At the age of 21, after late summer flu, Pete found himself struggling with exhaustion culminating with him passing out at his desk whilst at work. After several months of continuing to work he lost his job, as fatigue had led to more prolonged time off work. During this time Pete started being prescribed various medications and began a long list of hospital tests and investigations. Due to a chance encounter and seeing a different GP, Pete was referred to Salus and his first support group.
Over many years there was a gradual improvement in my symptoms. Through trial & error I found medications that helped and self-managed my condition (after a decade of learning the hard way about pushing myself too much).
Then a GP at my surgery became concerned with the length of time I had been on a medication for my panic disorder and felt it was masking, and not helping me overcome those issues. A subsequent CBT course with Birmingham Healthy Minds helped me to regain some of the self-confidence I had lost.
I started to understand and deal with my phobias a little but with all my other symptoms I was still very limited. I found myself feeling unable to progress any further with full recovery seeming impossible.
“It took great courage to attend his first Salus support group but even so Pete showed a thirst for
knowledge and learning new ways of improving his condition” Ron – Training Officer
Before the illness struck I had been very social but I became withdrawn and started avoiding social situations after bouts of severe fatigue had caused me to panic and leave a few times.
I suffered from a range of symptoms: chronic fatigue (sleeping or resting in bed for up to 20 hours a day); panic attacks; IBS, joint/muscle pain; depression; agoraphobia/social phobia; nausea and vomiting.
I have had various medications, some of which worsened my symptoms, including increased fatigue, IBS and panic attacks.
“After years of self-management I feel that the skills, confidence and support I am gaining from attending Salus will lead to great improvement in my condition. I hope that this continued improvement will help me with a pathway back to work and rejoining the world again!” (Pete)
A Mother’s Support
Janet was at a complete loss with how to deal with her 17 year old daughter’s diagnosis of Chronic Fatigue Syndrome in December 2013.
Only after her GP suggested she contact Salus Fatigue Foundation did she begin not only to learn how to support her daughter to improve her health and wellbeing, but also to enjoy time for herself and meet others who understand the impact of CFS.
“As a parent, the diagnosis was scary, and I was at a complete loss with how to deal with it”
First Contact with Salus
My daughter was diagnosed with CFS in December 2013 at the age of 17.
This followed from having glandular fever in 2012 and a particularly nasty virus in 2013 that left her feeling tired all the time and very down and withdrawn. The GP gave us the contact details of Salus and I contacted them in January 2014.
From the first contact I was welcomed to get involved with Salus activities and encouraged to attend the education classes.
“I found the classes on nutrition, the immune system, pacing, stress and sleep well structured and very informative particularly as everyone was encouraged to talk about their experiences, symptoms and to ask questions.”
Initially my daughter was upset by her diagnosis because there was no pill that was going to make her better and at first she was resistant when her illness was discussed.
The breakthrough came when she accepted that it was affecting her life and that in order to improve she had to accept help. Over time I gradually introduced changes to her diet, added vitamins, gave her suggestions to improve her sleep and talked through the concept of pacing her life. She stopped walking to school but overtime took up gentle yoga at home using the Wii to keep active. I particularly concentrated initially on the things she enjoyed like aromatherapy oils and candles to reduce stress.
My daughter did not want anyone at school to know because she didn’t want to be different but with my encouragement we contacted her tutor. Her teachers actively supported her because they could see she was trying to continue under difficult circumstances.
The last year of A levels has to be the hardest year at school with exam pressure, coursework and planning the future. By looking after herself and recognising her limitations she successfully got through her exams and she definitely improved once this stress had gone.
Support For Me!
The family and carers support sessions have been a source of information and reassurance that we are not on our own. In addition, the retreat days enabled me to enjoy time for myself and meet others who understand what CFS is about.
“Salus has definitely given me the knowledge and confidence to stay calm and actively support my daughter.”
The Future is Positive!
My daughter got her ‘A’ levels and has just started a degree in journalism. She realises that she has to put her health first but so far she has been able to enjoy being 18 and away from home for the first time.
My Journey With CFS
Sophia is one of thegrowing number of young people whose life has been turned upside down by CFS and who have found themselves with nowhere else to turn.
Sophia is now on a path to recovery and is keen to share her story so that others can benefit from her experiences.
Prior to becoming unwell I was working, enjoying a busy, social life and preparing to move to London to begin a degree course. I experienced a slow onset of my condition; I did not understand why I was feeling so unwell and put it down to working too hard, needing a holiday and general life stresses. In hindsight, I realised that I had pushed myself too far which then led to a rapid decline. At first I was very reluctant to take time off work; I had always been able to juggle a variety of things and thought that I could add having ME and Fibromyalia to the list of things to deal with and just push on! I struggled with a variety of symptoms and found the overwhelming fatigue, continuous headaches and the constant pain everywhere particularly hard to deal with.
It became clear that I needed to take some time off work and I believed that if I rested for a few months I’d be able to return to work and then start my degree. I continued to get worse and had to make the decision to withdraw my university application. By this stage I had reached rock bottom. My diagnosis had left me feeling pretty lost because there did not appear to be a clear treatment plan or one place where I could access support specifically for people with ME and Fibromyalgia.
“ I then found Salus, and this was the turning point in my recovery. From the moment I arrived I felt
like I was with people who truly understood the condition; they were warm, welcoming and most importantly to me, positive.”
I was surprised and impressed by the amount Salus had to offer. There are workshops covering a variety of topics such as nutrition, aromatherapy, pacing techniques and sleeping strategies. They offer monthly support groups across Birmingham as well as inviting occasional guest speakers who are very experienced in their field of work. The practitioners at Salus are friendly and supportive and offer advice and practical information tailored specifically for people with ME and Fibromyalgia. The sessions are delivered in a way that enables you to quickly and easily implement changes in your own life. There is also the additional support from fellow beneficiaries and volunteers. Salus has a sense of community where you feel safe to share your experiences with others and you realise that you are not alone with your condition.
“It was not until I arrived at Salus that anyone had told me that I was going to get better (after a quick online search you can begin to feel like being well again is far from achievable), and yet here I was, with people who had had ME and were now healthy again.”
That being said, we are not sitting around crying into our cups of herbal tea! It really is a very positive environment, where we do not dwell on the negatives and where we learn strategies on how to cope with the condition and ways in which we can all improve our health. Moving forward, I am going to continue to focus on my health. I hope that it will not be too long before I am able to return to work and begin my degree course.
“I have come a long way since my diagnosis and although I still have a long way to go before I am well again Salus has equipped me with the knowledge, skills and confidence to be able to get there. Salus has been instrumental in my recovery journey and I am forever grateful that I have them in my life.”
After attending Salus for just over a year Sophia recovered enough to return to work.