First of all I owe you an apology last week was a bit crazy and instead of pushing out a not so good post I thought I would look after myself and have a week off. However, here you are so maybe I should explain that I have been going through a lot of self-discovery recently and because of this I find myself looking back as I look forward.
Last Friday was so exciting I went to the Mind Body and Spirit festival which was held at the NEC in Birmingham. It is not too far from me and I was lucky enough that one of my friends Josh and his Mom fancied having a day out there too. I used my wheelchair and Josh was kind enough to push me, there was a lot of walking at the event so I couldn’t have done it!
It was also a very overwhelming event, there were of course a lot of crystals there but also everyone was open and the energy really affected me and Josh. Not in a bad way we could just feel a lot even with grounding and protecting before the event which I dread to think how it would have been if we hadn’t! The day went by so fast and to be honest I did not buy much or look closely at much because I felt overwhelmed by it all. That said it was a wonderful day out with one of my close friends and I would go again now I know what to expect.
It has taken me a couple of days to recover of course, but that was good, it gave me time to think and to come to terms with something I only found out last week! I went to see my GP to see if there was a plan after being diagnosed with ankylosing spondylitis and Ehlers Danlos syndrome (EDS) in April.
My doctor looked at my records and found the letter from the specialist and that was when she told me that I have always had EDS and in fact it is the fact that I have been overstretching and misusing my joints for so long it is actually the EDS that triggered my Fibromyalgia. I did a You Tube video about how this made me feel and where my head has been at since I got this information:
I think I needed a little time to understand what this news meant and how I was going to process it, I mean it makes sense but still the EDS is such a new diagnosis I wasn’t sure how to take it. Now I cannot help but be thankful for good friends who stand by me and my wonderful husband who is always there for me no matter what, I am so so lucky!!
Moving forward my attention is going to the EDS, on protecting my joints and looking after myself I will be working closely with my physiotherapist to get my body stronger and hopefully by using my joints correctly and doing gentle daily exercise. I do most of that using You Tube and if you ever wonder what sort of things I do it depends on how I am feeling on the day but it is always something from this playlist.
I have also learned how to subtitle my videos and it means creating a video takes much longer but it is so worth it when I now know it is as accessible as I can make them. I will hopefully be working slowly through my older videos to get them subtitles but if anyone would be up for helping please just email me for information as to how I need all the help I can get!
So if you have been reading my blog for a while, you will know that I was diagnosed with two illnesses Ehlers Danlos Syndrome (EDS) and ankylosing spondylitis. Looking back some diagnosis just make sense and for me that is EDS, when I started to research it all just seemed to fall into place.
See back when I was a kid I had a lot of problems with my legs, they were constantly painful and the one time I saw a doctor I was told it was just ‘growing pains’. However, the fact that I was late at walking, and that my legs were so stiff that I couldn’t straighten them when sitting surely someone should have put the pieces together?
Thing is that though it answers some of the questions I have had my whole life it doesn’t change the fact that I live in the now. I am trying so hard to live in the now and to bring more mindfulness into my life, looking backwards just brings negative thinking and depression. I have to try and hold myself back from that and try to work with what I have.
Right now I am doing all I can to keep my body as healthy as it can possibly be and to do that I have listened to my physiotherapist. Now I love my mother, but she never does her exercises, me on the other hand I try to fit them in as often as I can because I am determined to keep on my feet and as mobile and as well as I can for as long as I can.
Now I am quite lucky because I have always done done form of exercise, though it is frustrating that my body is unable to keep working at the pace I wish it would. I miss doing Yoga with Adriene routines, I liked having goals of particular poses I wanted to work towards however last year it became easy to see that I had to step back. I was having my joints dislocate and having a lot of neck pain which was only made worse by doing the plough!
After talking to my yoga teacher I dropped out of yoga class which was such a hard decision because it got me out of the house and gave me some social time that I very much longed for. Thankfully soon after I discovered Sleepy Santosha and I have been keeping on top of my body’s flexability and maintaining a level of fitness that I am thankful for and so is my physio! Right now that and my physiotherapy exercises is more than enough for me and if I try to do much more now I find the small amount of housework I can manage is totally out of my reach!
I do think reflecting back on things is important and there are times when it is very much needed in life, but I also believe that living in the now is all we really can do. It is hard to admit that I could have looked after my body better if I had known what I was suffering with back then, but I am proud of where I am in life now and the person I have become…surely that is more important?
So as I sit here writing this I honestly don’t know how I feel about having two new illnesses diagnosed. On one hand it is great to have some answers and to have a plan, but on the other I wanted it to be something they could cure you know? However, I wanted to give you all a health update because I feel like you guys know so much that I need to get this out there.
So over the last few months I have seen a headache clinic, and had MRI scans, and seen two rheumatologists. On Wednesday I went to see a new physiotherapist who confirmed that the consultant thought I had a type of arthritis called Spondylitis in my upper spine and neck which is why I get so much pain and stiffness.
She also told me that I have a form of Ehlos Danlos Syndrome called hyper-mobility EDS and will need long term physiotherapy and occupational therapy in order to keep my joints working. I potentially will need a brace for my one thumb and she explained that as long as I work on improving my muscle I should see improvement in the stability of my joints.
I came home feeling overwhelmed and since then my depression has dipped a little and I don’t think it is because of the diagnosis. I mean it is a good thing to know I will be looked after long term, though not by a rheumatologist by the physiotherapist. I don’t know why it has shaken my depression up a bit, I guess it is just a lot to take in to know that I am going to have this pain and these are potentially both illnesses that can get worse.
I think for right now the thing that has upset me the most, is that I cannot do the type of yoga I love or go to yoga class anymore because it will not help my joints. I am feeling down about that, but I will still be doing yoga with Sleepy Santosha on You Tube so that is a good thing! I am determined not to let this news get to me too much so I have things planned to try and keep my spirits up, like getting my hair cut tomorrow and going to my friend’s murder mystery party next week!
So there we are, now you know why I have been a little like a hermit but I am going to be moving forward with a lot of gentle exercise, and working on improving my diet so I can be as healthy as this body allows!
So my chronic illness journey, like for many, has been complicated! It took them 5 years to diagnose me with Multiple Sclerosis, and then 10 years after that they said they were wrong and discharged me from Neurology. I was referred to a Rheumatologist and finally diagnosed with Fibromyalgia…but then they discharged me too…
Since then I have relied heavily on my local GP, and intermittent referrals to physiotherapy to deal with my illness. So I went from ten years with a specialist nurse, specialist neurologist, and psychologist to nothing and I have often questioned why but never really had much luck getting an answer.
Today I returned to my GP with new symptoms:
- Pressure migraines thanks to the pain and cramping I experience from Fibro in my shoulders and neck
- Dizzy spells
- Almost passing out if I bend down and then stand up again
Honestly I was sure that I would not get much help from the doctor because I never do and it was a new GP I saw, I wish I could say I was hopeful and determined but after almost 3 years with no real back up for my illnesses I had more or less given up.
However, when I saw the GP she listened to me and looked back in my files and agreed that I should have more help and a regular specialist who can support me more with my symptoms and who will help me. It felt like such a relief to be taken seriously and listened to and to be told she would make sure I was referred to someone and got the help I need.
I really felt so much lighter and almost like crying as I left the doctors because I have just been told to drink more water, light exercise and to maybe have a referral to a physiotherapist. It really felt like the moment my diagnosis changed so did the level of care I received, but my symptoms and my actual experiences with the illness did not change. I am so thankful that I got to see a new doctor today and I am hopeful that I will get better care and be taken more seriously from now on.
So I do not drive, and my husband has epilepsy so if he has had a seizure within the last year he cannot drive either. Thankfully, I do not leave the house very often and we have a great support system of family and close friends who take us to hospital and doctor appointments.
Now I have always had social anxiety when I was a child my parents and the people around me just said I was shy and sensitive. I was often forced to do things at school that would make me physically sick like talk in front of the class and even going to a class alone would give me so much panic I thought I was going insane!
However, when I got older and other mental health issues like depression came into my life and I had counselling I came to understand more about social anxiety and how it is not just being shy or sensitive. It is crippling and caused me to lose friends, and avoid things like speaking on the phone, talking to people at the supermarket etc just to avoid the overwhelming panic that this brings.
When I go to the hospital my husband will usually try to organise it around his work, and this is because of my anxiety but also because of my memory problems. I have a lot of issues with remembering people’s faces, where things are like how to find the exit after leaving a room, and knowing what happened after an appointment and what happened can be so hard.
However, this is not always possible and this happened yesterday with my physiotherapy appointment I had a lift from a family friend and when he takes me he will wait in the car with my dog while I am inside. So this means I have to navigate a lot on my own, talking to receptionists, taking the lift, sitting alone waiting, trying to remember what is said, explaining myself, and navigating back to the car. On top of this I needed to go to the pharmacy and deal with that so my anxiety level was on 11/10 and I was moments from a panic attack all day!
My anxiety started the night before, where I lay in bed thinking through the route through the building and my head thinking up scenarios like me falling over and people laughing, me getting lost, people staring etc. When this happened I used lavender pillow spray to help calm me down and help me to sleep. There are many recipes to make your own on Pinterest and also you can buy things like this online or in chemists and essential oils shops.
All day leading up to the appointment was stressful as I tried not to forget anything and I think I changed clothes about four times! Thankfully I use a backpack so I can take more things than I need which helps calm me down a little. I tend to carry things like tissues, cough sweets and lipbalm because I worry I will get a runny nose, or cannot stop coughing and also I lick my lips a lot when I am nervous! If you have triggers just carry things that help in those situations will ease your fears so much and certainly a trick I learned as a teen taking exams!
As I made my way to the appointment, and waited I used breathing techniques that my therapist gave me when I had counselling which is breathe in slowly to the count of five and out to the count of five and do it counting how many times you can do it without your mind wandering. This is a Buddhist way of meditating and actually how you learn to train your mind to quiet during meditation, it is very effective as you have two sets of numbers to concentrate on and so you cannot panic. The slow and deep breath also helps to calm your fight or flight and adrenaline in your body so you stay calmer.
My fears about forgetting things and explaining things is difficult, however I find practising it a couple of times in my head helps and asking my husband what to say helps. I also always ask the doctor, nurse or therapist to write down what was said, and they usually are more than happy to write a few notes or send some things over to you.
Overall yes if you have social anxiety these things will not take that feeling away totally, however it does help to have these things in your back pocket to use. They take practice and time and effort, but if you are willing to put in the work you can push through and overcome things that scare you.
So first of all I have actually been referred three times to physio, first time for my shoulder they injected it and said they would call with an appointment and I never heard back. Second time was for neck and upper back pain and I wanted some exercises or something to help ease them, and I heard nothing. Third time was for my thumb and I heard nothing so we called the doctor who referred me and they said they should have given me a number to call but the doctor must have forgotten! Thanks for the pain I had in that time while I waited!
I explained this to the physiotherapist I saw and she said unfortunately they know nothing about the other times and only knew about my thumb….yeah not impressed doctor!
Anyway, the doctor had said he thought it might be the start of arthritis as it runs in my family and can be experienced with fibromyalgia. However, after examining my thumb she thought it was just an inflamed and irritated joint and gave me some exercises to do at home to keep and improve my range of motion as it is my dominant hand.
She said maybe in the future they might inject the joint or give me steroids but they wanted to try these exercises first. I was thankful for this because anyone with chronic illness will tell you that they do not want more tablets if they can help it!
She is also going to try and find me a different type of walking stick that does not put my weight into that joint like the one I use now and this will help me to be able to help the joint heal and walk safely. I was also told to ice the joint every day to help bring the swelling down so I am feeling good about this. I am thankful it is something that can easily be treated and the therapist was really nice which I was thankful for too.