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.
This week I wanted to talk about fatigue and how hard it can be to just want to get out of a warm, comfortable bed when all you want to do is rest. When you wake every morning in pain, your joints stiff, your head aching and every limb hurting on top of extreme fatigue it is so hard to want to get up and get your jobs done.
I spoke on this weeks Chronic Illness Video (HERE) about how fatigue feels, it is not just being tired, or how you feel if you couldn’t get comfortable at night so check that out if you think it is! Fatigue is deep inside extreme tiredness that makes it impossible to want to do anything.
Now if you have been reading my blogs for a while, you will know that I am a very motivated person and if I set myself goals I will do anything to achieve them. The problem comes, when your body is heavy and tired and you cannot think straight enough that you are still a person who wants to do things and be a human! You have dreams and goals and when day after day you are not well enough to achieve them that can be incredibly demoralising and depressing.
It has taken me a long time to come to terms with this, I have been sick since 2002 and I have just started to be able to do it! But, being patient and not letting guilt take over can be the first steps in accepting what you can and cannot do and then coming to peace with your illness and your goals.
In Buddhism, acceptance and peace are the main goals and applying that to my illnesses has helped me to relax that inner need to do the housework every day and do a yoga routine every day and take the dog out and cook healthy dinners and…..There will always be ‘ands’ but take a breath and remember that being the perfect person is not something we can ever achieve.
I am reading a book called ‘How to live well with chronic pain and illness: A mindful guide’ by Toni Bernhard and to quote her:
“The unrealistically high standard at work here is that we don’t think we should be chronically ill. Even though 130 million people suffer from chronic illness in the United States alone, we live in a culture that repeatedly suggests that, with proper diet and lifestyle changes, no one need be sick and no one need be in pain. When we’re not living up to what we perceive to be that cultural standard, we feel embarrassed.”
For me that really hit the nail on the head, it is society constantly telling us that we should be perfect, loved, and happy if we just eat the right foods, do the right exercise, everything will be sunshine and roses! But when famous people, who the press tell us are perfect and to be like them, are committing suicide, taking drugs and turning to alcohol to cope…can we really expect our lives to be perfect?
I think what I am trying to say is, do not let society make you feel less because you couldn’t do that load of washing, or you were in too much pain to walk the dog! Be prepared to have days, sometimes weeks even months, when all you can do is rest and do not feel less because you need to just sit.
My best advice is to use a slow cooker and have meals prepared in the freezer, have family help you to do things and do not let anyone ever make you feel less because I know you are fighting every day just to want to get out of bed and some days that is enough!
So this morning I woke up crying, I had slept passed my alarm and my pain was to a point where I was crying. It was so painful literally everywhere that I couldn’t move and I felt sick, I knew I needed my tablets and I knew I had to force myself to eat…not easy to do when you feel like this.
More and more I am finding my pain is breaking through my pain meds, and yes I have tried CBD oil but it makes me drowsy so it would still stop me doing things! When my pain is this bad it is almost impossible to contemplate yoga, and housework or anything other than laying still and trying not to cry.
A couple of weeks ago I had an appointment with a pharmacist to go over my meds and see where I can change things to make the pain relief better. Unfortunately, he said I was on the maximum medications and should not be having much break through pain so if I do to take paracetamol and if that does not help to get a referral to a pain clinic!
I have been to a pain clinic before and they were not very helpful, they said there was not much they could do for me which to be honest was a blow to me. I hate pain, it is so hard to want to do anything when you are in pain all the time. In fact, it makes me want to scream and cry, though I tend to hold it inside because I hate worrying people! Right now I am also having trouble with my ears which is affecting my balance and giving me pressure migraines and both of these things along with my chronic pain make me want to curl up in a ball in bed and never leave!
Now I have had chronic depression since I was 14 years old, and I can tell when my mood is dipping, tearfulness and wanting to hibernate are my biggest tellers and the things I look out for. So right now as I am avoiding talking to my online friends and wanting to be left alone to try to cope with this extreme pain I am trying to look forward, make plans to achieve my goals.
My goal is to be where I was two years ago, back then I was doing yoga, managing to do a little housework, take a shower, walk the dog on a short walk and then rest. This is all I want, so that is where I want to see myself again so I can contribute to keep up with the house, I can look after my doggy, and keep up my exercise.
To get there I am going to see if I can speak to my Dr tomorrow about:
- seeing someone about my migraines
- get referred to the pain clinic
- maybe get myself a referral so I have a specialist overseeing me regularly for my fibromyalgia like I did when my diagnosis was Multiple Sclerosis
Hopefully if these things happen I can start to get myself back to being the person I was and build up my strength, and get myself out of the depression hole I am starting to fall into!
Have you experienced this? Did you get anything out of seeing a pain clinic? What are your goals? I hope to get some advice and tips so leave me a comment.
I am feeling a little overwhelmed and tired, and it is all because I want to be able to be a person a normal person and I want to do things and get things done but my body feels so heavy and painful and tired! I sometimes feel like I am trapped in a body that does not want to do the things I do so it tries to hold me back and stop me from doing what I want to do!
For example, today has been a good day I have done a short yoga sequence, cleaned the bathrooms, had a shower and now I want to write and catch up on things…but now I am in pain in the back of my head, my shoulders and upper back. I also feel so tired I keep having to retype words because my hands will not do what I need them to!
Part of me thinks it would be easier to give up and live in a dump let myself get fat and my brain go numb watching daytime TV!!! However, I am not built that way, I need to learn and grow I need to keep on top of my body which is squishier than I’d like, but I can only do my best right?
So, I know this post is a little moany, but to be honest that is how I feel at the moment! My husband is struggling too I think it is the weather! In the UK right now it is cloudy, hot and the air feels heavy. This kind of weather gives me a lot of headaches and my pain is always worse when the weather is up and down like the typical British summer.
Now, if you read my blog regularly you might be wondering how I am going to get myself back to the positive again????
Well, I have thought long about this and I think I am going to tackle things in smaller chunks! I am going to spread my work out through the day so maybe 10-15 minutes three times a day instead of trying to do it all in one? Also, maybe break down my cleaning even more, so if there are a lot of ornaments in a room, maybe clean it over two days? Yes when pain and fatigue get’s overwhelming it can be easy to give up and yes I have a little weight to lose right now, but if I am patient and keep on fighting I can do this!
Yesterday was a big day for me, I love making new friends and going out, but when you have an anxiety disorder it can easily spiral into something you force yourself through instead of enjoying yourself.
I was going out with one of my best friends to celebrate her getting married, we first went out to learn to make cocktails in a really nice bar, and then to a different place to eat a lovely meal. We went out to a big city close to where we live, but it was still an hour each way on the train and walking from place to place though thankfully they were less than 5 minutes walking from one another.
I woke really early and was ready to go a long time before I needed to be, now this is normal for someone with an anxiety disorder. I was ready early because I didn’t want to make anyone wait or let anyone down. But waiting has it’s own problems because then I have time to worry and make up scenarios in my head. To combat this I watched you tube videos on my ipad, they are perfect because they are short and you can watch them without worrying too much about getting caught up in them.
I bought myself a new dress to help with my confidence as well, and though my dress was 1950s style I felt so pretty in it and not like I stuck out. I think that with a little make up really helped me to feel like I could hide if I felt overwhelmed, but my friend and her friends and family really were lovely and helped me so much! Even when a man in the bar made a comment about me looking like his mother because of my walking stick I managed to shake it off and just have fun!
I made sure as well to have a few drinks and to have fun, but to be careful not to go too far and to drink lots of water as I did so. I had such a fun time, I ate well and the best part was going behind the bar and making actual real cocktails! They all tasted so yummy and fresh and perfect for summer I could have stayed there drinking them all night!
The walking has left me with aching legs, however people walked at my pace and looked after me which I appreciated so much I have been left behind in the past and it does not feel nice at all! I also came home early before I was wrecked (thank goodness for adrenaline am I right?) and got straight into my pyjamas and got into bed.
Today I found my energy so low and my head is aching, my legs hurt, my feet are swollen and itchy, and overall I just want to sleep…but it was so worth it! I think going out with friends is just as important for mental health as meditating and I just wish I went out with friends more often!
Phew it is getting hot here in Britain, something we are not used to and even though we know it is coming we never seem to be prepared for it. I know many people here complain we do not get much of a summer, but when it comes I must admit many of us Brits end up complaining about how stiflingly hot it is!
Today I am in a sundress, something you rarely see, my legs, are on display and I am doing my best to get my jobs done though my pain is bad today. The heat seems to make my hands and feet swell, and I get worse pain everywhere because of it as well as my fatigue making me just want to curl up and sleep!
The main problem which is fatigue, I deal with by going to bed early, taking naps and staying in my living room. We don’t get a lot of sunlight in there because we have a small window, so it is perfect for us migraine sufferers who can find too much bright sunlight will bring on an attack! I also make sure to have my large, tower fan on the go all day sweeping the room in cool air, it really makes a difference and keeps me from melting in the heat.
I also have two more things in my toolbox to help me cope with the summer, I bought them when I first got sick so over a decade ago, so I am afraid I cannot provide links as I usually do. However, they can be found both on Etsy and Amazon if you have a look, one is a scarf with gel inside, and the other is a pillow with the same gel inside a pretty cover. You submerge them in cold water for a few hours and then they can be used to keep you cool, I think you can get clothing as well to keep you cool. A good look online should bring up some good results.
I do not tend to sit outside, but if I do I make sure I am under an umbrella and in the shade, as well as using sun cream so I do not burn. At night I have a tower fan on all night to keep me cool so I do not have trouble sleeping and do not wake up with exacerbated symptoms thanks to being too hot all night!
I hope you all have a lovely summer, please keep cool, wear sunglasses and cream and have a look online there are lots of ways to help us Spoonies keep cool in the summer months.
The last year has been incredibly hard for me, I lost my Granddad, I had a flare of my fibromyalgia and my depression crashed down on me. I stopped really caring about how my house looked, how clean and tidy it was, I stopped looking after myself and just got lost in symptoms, and depression.
After recently seeing a psychic (HERE is a video about that) I found my depression and grief lifted and I started to realise that I wanted my life back. I might have constant pain, anxiety, fatigue and neurological problems, but I like my life and I am happy. I don’t expect a lot from life and all I want is to get back to daily yoga, meditation, and housework and to have enough energy to cook a healthy meal in the evening.
So how am I going to manage this when my flare has left me with more pain and fatigue though the worst of it has eased along with the depression. Well, if you have been following my blog for a while you will know that I am a planner, and this is how I am going to get my routines back.
I have my week ahead planned, I know what I am going to do and how, and that has left me feeling far less worried and overwhelmed. I have remade up my natural cleaning products and I am back to my determination to lessen the amount of chemicals in my home. I am hoping that with my new plans, my determined nature and lots of breaks I will be able to keep up with the daily routine I started today.
I woke up and took my medications at the usual time and then hit the yoga mat for a gentle 30minute practice, I then lay down and followed a 15minute guided meditation and then a short bible study. I then ate a yummy smoothie bowl and rested for a while before cleaning my living room. By the time I had done these things it was after 1pm and I was amazed at how long these few things took me, however I felt incredibly proud of myself for taking my time and listening to my body. After a shower, I came here and wrote this blog, I am hopeful that by breaking things into shorter tasks and being organised I can do this routine every day.
What I want to say is, life is hard with chronic illness, they grind you down and can become so hard to live with, but if you keep pushing and keep motivated you can still achieve your goals!
Wow is it just me or is the world getting crazier? Here in the UK we have had a concert in Manchester bombed and now stabbings and people hit with a van in London…I am in a small town but I have friends all over and who knows where the next attack is going to come from?
Now I know this will go against the first sentence I wrote up there, but I in fact do not think the world is getting crazier. I have lived through the IRA attacks, I have seen bombings and shootings and wars all over the world and I ask myself, when will we learn? People seem to be nastier and more outspoken, maybe because of the internet or maybe the internet has just given nasty people an outlet?
Either way for me personally seeing that nothing has changed leaves me quaking in my boots afraid to go out of the house to walk my dog and feeling very small and scared. I have been diagnosed with Generalised Anxiety Disorder, which is characterised by WIKIPEDIA as:
“Generalized anxiety disorder (GAD) is an anxiety disorder characterized by excessive, uncontrollable and often irrational worry, that is, apprehensive expectation about events or activities. … These symptoms must be consistent and ongoing, persisting at least six months, for a formal diagnosis of GAD.”
I have had this my whole life and was diagnosed about six years ago with it by a therapist who gave me a lot of coping mechanisms and tips and tricks to learn to live with it. In the last few years, I have worked hard to be able to go on short walks with Gizmo alone, and to be able to speak to people in shops etc.
However, these attacks have sent me scurrying back into my home to hide away, the thought of going away to London for a convention is in question and I feel like terror is really setting me back. The problem is that these evil people can strike at any time, we do not know who they are or when they are doing this which is why it is such a shock when it happens. I am worried that this will undo all the hard work I have put in and I really do not want that to happen.
I am hoping that I can set myself small goals, and use logic to try and stop myself slipping backwards, and I can only pray that these attacks stop soon. I hope we as humans can be good and can learn from the past, I do not understand war and I never want to know it all we can do is put our faith in the government to keep us safe and to protect us.
Stay safe everyone
Summer is here in England, and as we Brits know that means it is hot, humid, stormy and can be raining in the morning, blazing sun in the afternoon and that night have a storm! The problem for us fibromyalgia sufferers is that means our symptoms start to shout and make themselves known and mine certainly are!
I have been having a lot of sinusitis, headaches, pressure migraines, burning pain in my arms and legs, and increased pain in my shoulders, upper back and neck…basically I hurt everywhere and the medications I am on from the doctors are not really helping anymore! Usually I would make an appointment to see someone and get my meds reviewed, but at the moment that is not really an option as getting an appointment means waiting about a month or begging and pleading every day!
So being typical me I hit google for alternative therapies and the one thing I have not been trying is supplements. The problem is as you can see from THIS LIST is that there are so many recommended for fibromyalgia how do I know where to start? I am feeling very lost and overwhelmed and wishing I could win the lottery so I could maybe have all the latest treatments and get rid of the daily pain!
However, as that is not really an option I have ordered two books from Amazon one is From Fatigued to Fantastic and Pain Free 1-2-3 both by Jacob Teitelbaum. I got them used and they are coming from the USA, but by getting them second hand I am saving almost £25!! I am someone who does believe in Western medicine, afterall I was a nurse before I got sick, but honestly I feel like it is letting me down and I need to take control of my own health!
When I was wrongly diagnosed with Multiple Sclerosis I had a psychiatrist, a neurologist, physiotherapy, accupuncture, even people to cut my toe nails so that I wouldn’t hurt myself while unable to feel my feet. Now I have a different diagnosis all of that has gone away, and it is really hard for me to get in to see my GP. My symptoms however, have not changed and I sometimes feel like I have been kicked out and left to deal with it all by myself. Well if that is the case I am going to study and get my symptoms under control by myself I am not going to let it beat me!
So readers, what alternative therapies do you use? What have you tried has has or has not worked and are there any books that have helped you?