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?
Phew what a week!!! Monday I travelled alone by train to London to stay with my best friend Louise, we both have chronic illnesses so we mainly rested, but we did go to see two plays! And then I came home, rested for one day and then went to a convention where I met some of the cast from IZombie!
London is overwhelming in itself because of me mostly being home alone and being in a small town, but add into that a convention and I feel dreadful! My pain level is about 11/10 and my fatigue saw me not get out of bed until 3pm today!!! I need a holiday to recover I think, instead I am at home and using everything in my arsenal to be able to get my body through it!
I love having these little adventures, but my body really struggles with it so I have to be careful and rest lots, which I did. Thankfully Louise understands and we only went to the plays with nothing else planned while I was there. We spent a lot of time in our PJs and resting which was a lifesaver when I went to the convention!
Now I have a pressure migraine, I am so tired and my upper back in painful, my arms and legs are burning and overall I just need time to recover. I do struggle with giving myself a break and understanding I need to rest more than most people. My father my whole life made jokes that I am lazy and he still does it now, I often feel like I let him down because I am not able to work or to keep up with things like he can.
However, I realise he just doesn’t get it and I have to quiet those voices that make me want to push myself to the point where I have a flare and end up needing more meds or referrals for more care! Instead, I need to rest, to use whatever medications, lotions, potions, heating pads or anything at all that can help my body recover. I wish I could ignore my body and push through but that would be stupid, I am not well and I need to give myself a break. So I will look through my photographs from my adventures and remember it was all worth it!!
So I am really excited I am going to London tomorrow for a few days to spend some time with my best friend Louise and to see some plays. London is not the most disabled friendly of cities and I find it can be a case of lots of planning when it comes to making it happen. Thankfully, Louise has lived all her life just outside London, and has suffered with chronic illnesses for most of her life so she is used to dealing with things and is great at navigating the city.
Both she and I suffer with fatigue so we have nothing planned during the days we are going to simply rest and concentrate on the two plays we have booked. Booking disabled tickets for theatres in London I have found to be a bit of a lottery, sometimes you get a free ticket for a carer, sometimes you have a terrible view it is all down to the individual buildings.
Planning travelling around the city can be difficult as well because the Underground system was built so long ago and most of the stations do not have wheelchair access because they do not have lifts. I have however, enjoyed seeing the city through travelling by bus, which can be hard to navigate, but all busses have lift access and wheelchair spaces.
Louise and I however, usually go by taxi, we are both disabled which means her parents do not need to worry about us as much and you can just sit back and relax. I will say though be aware that some taxi drivers can get grumpy when they see that you have a wheelchair so make sure to mention you use one when booking!
The biggest obstacle for me is not so much travelling within the city though, it is the journey to London, which thankfully is one train with no changes! They are easy to book, British Rail has a disabled booking line and you can call to book assistance which will be help on and off the train. Because I will be using my wheelchair they will use a ramp to get me on and off the train and I will get help both ends and both times I will be using it.
My anxiety comes into play because though I have booked assistance every time I have travelled, there has been a couple of times when nobody has come to get me off the train! This is incredibly scary and I get afraid that I will be left alone on the train unable to get off or taken somewhere far away! Thankfully my friend is meeting me off the train in London, and my husband is meeting me this end, I will of course be adding photographs to my instagram and updates to twitter so make sure you are following me for my London adventures which I will tell you all about when I get back!
So yesterday morning my husband took me to see Guardians of the Galaxy vol2 and out for lunch because I love going to the cinema and I was so excited to see it. I have recorded a You Tube video of my review which I will post up tomorrow so look out for that.
However, today I want to talk about how this sort of day affects me and people with chronic illness who just want to have fun! First of all, choosing what to wear and doing my make up gave me so much anxiety and I always get this way when I am going to be around humans. If anyone watches the news you know how scary the world is and I rarely leave my house so I often worry about going out, but I am stubborn and I push through it and make myself face the world.
I have been struggling with pain the last few days especially in my neck and arms, and I found this was made worse by the cinema seats. The cinema we go to is really nice, and for anyone sitting for long periods is difficult in one position, but I was constantly having to do neck movements I have learned in yoga to try and help the pain.
I also took my own snacks because my nausea was bad, I was thankful for this because I did not want to completely ruin my healthy eating just for one day out! Having a coke between us in there was nice though because it meant I did not get dehydrated, but the sugar in that stuff sent me a bit loopy!
Of course, cinema’s are always loud and that triggered a lot of pain for me because loud sounds increase my pain and I know a lot of people with chronic pain find this. I can no longer listen to loud music or tolerate loud movies and as this was an action movie it was pretty loud with a lot of music. I came away with a lot of pain and wanting to retreat into bed where I could rest, however it is rare I get to go out like this so I wanted to go for some food as well.
We went to Frankie and Benny’s which is an Italian style restaurant and we love the food there, I had a fruit cocktail and my husband tried a cola float for the first time. It was a nice chance for husband and I to just chat and relax together and I was really thankful for that, I enjoyed sitting because my leg pain was kicking up a storm by then too! I ate as much as I could of my main, which was spaghetti with tomato sauce and salad with a side of sweet potato fries and I really enjoyed the treat but by the time I had eaten that I knew if I tried to eat a pudding I would end up being sick.
Lastly we went to a store near to there and bought new pillows because our old ones had flattened and were painful and uncomfortable to lay on. By the time we got home me and hubby were exhausted, I was going to record a review of the movie but I had to rest my fatigue was giving me just enough energy to get into my PJs and climb into bed. We got home at about 5pm and I woke up at 8pm, I took my meds and then went to sleep for the night, I really wish people could understand that a date for me and Lee is so hard for us both and though we want to do it more often it just is not something our bodies allows!
At the moment I feel a little like someone just tossed everything that feels safe in my world up in the air and I am running around trying to catch everything!
My husband is a police officer, but he has epilepsy and if he has a seizure he will be put on restricted duty. Also, because of his work he gets very stressed, it is high pressure and he gets a lot of hate from the public etc. So when the headquarters set up a job for officers that are on restricted duties for whatever reason my hubby went for it and got it.
It has longer travel times because he is further away and it is in the city centre so he takes public transport rather than driving. This is of course cheaper and gives him time to read and relax on the train which is great, and the job itself is office based and much less stress so I am really thankful for that.
However, I have an illness called Generalised Anxiety Disorder, which basically means I have panic attacks and fear over things that most people have no issue with. My anxiety is always there and I have had it all my life so I am used to it and day to day meditation helps me to cope with it. However, this new job means that Lee is not at home much more than he was before.
On an early shift he used to be home around 4pm and I would cook and get sorted while he had a shower and it worked really well he was always more tired but we had a system. Now he is home about 6-6:30 and by then I am in pain, extremely tired and unable to stand long enough to cook. By the time he has showered it is time to me to get into bed and it would be impossible to cook for me and I do not want Lee to have to cook after being at work.
Cooking is really important to me, I worked hard for occupational therapy to say I could cook and I have researched a lot so we have food that is not processed or junk food. I have found twice in his first week at work that we have ordered in food because I was not up to cooking so we for sure need a new way! I am frantically trying to find good vegetarian slow cooker recipes which is not easy because there are not a lot of imaginative recipes out there for non-meat eaters!
On a late shift he is home now at least 2 hours earlier which is such a blessing, but he leaves now at about 10am and not 1pm like he used to! Mornings feel like a scramble as he rushes to get ready in time and I struggle to wake up and get my body moving! I am not good in the mornings because my body is stiff, and my fatigue is awful first thing it takes me a good hour or so to wake up enough to get out of bed.
All this change is hard for me to deal with, I am so thankful for this new job and so proud of my guy I could burst, but inside my tummy is like a washing machine and my nausea is pretty bad as well. I am going to take the next few days Lee is off to find some slow cooker recipes I can make on his early shifts so I am not standing for a long time, and finding a way to get our mornings running more smoothly.
I think it is important when anxiety is taking over to breath, it is so easy to forget and let those shallow, fast breaths take over which is part of fight or flight. However, that breathe is extremely unhealthy and unnatural to have all the time, I use the things I have learned about breathing through yoga to slow and even out my breathing so my body can relax and I am not struggling so much with that side of it.
I also step up mindfulness and meditation, both things that stop my mind wandering to imagining terrible things and letting those negative thoughts that tell me I am letting myself and Lee down etc from taking over. I have learned through these things that I am in control of my thoughts they are not in control of me and that was a big lightbulb moment for me with my anxiety and depression.
Humans hate change, we fear it and with my anxiety unnaturally strong anyway it is important for me to thing logically and to remember that by talking with Lee and by organising myself better these things will soon fall into place.
So as the year sweeps by me I find myself struggling more with my fatigue, in fact I am not sure it has ever been this bad which worries me to no end! I am someone who has always liked to be active, I have always tried to exercise, I love to read and to learn new hobbies and yet at the moment I can more often than not be found curled up on the sofa doing a zombie stare into space!
At the start of this year, I made a promise to myself to start daily yoga and to get more into crafting especially learning to knit and crochet. However, as fatigue has upped it’s game I have found myself struggling to keep up with my housework no matter daily yoga and new skills!
But I am not a woman to be easily dissuaded once I have made a decision I will keep going for it no matter what and those goals are still things that I would love to achieve. So though my body is heavy and my eyes sore and gritty I am going to get with the programme and make things happen…but how I make them happen might have to change a little.
I was trying to power through a yoga challenge on you tube, I have completed it before and was determined to again. However, I just kept on failing and in fact by pushing my body too much I was in more pain as well as more fatigue. So Instead I have concentrated on more restorative yoga routines, my body needs help to keep the strength I have worked hard to get not pushed beyond it’s limit! The fact that I am now able to do daily yoga again is lovely, I am now doing shorter routines that concentrate on relieving pain and helping my body to relax before bed. I am enjoying my favourite hobby again and finding my body feeling so much better!
As for hobbies, well I have kind of stalled, my pain, headaches and fatigue are ganging up on me so for now I am going to concentrate on housework and yoga. I am not one to give up or surrender though and this is a ‘paused for now’ not a ‘I give up’.
I am also working hard to make sure I am fully rested at night by getting settled in bed, taking my CBD oil at the right times and not waking too early in the mornings. Trying to feel fully rested when you have fatigue is almost impossible, but I am doing everything I can and at the end of the day when I am tucked up in bed is there really more that I can ask of myself?