Finding my range ‘body fixing’
What does a toolbox have to do with a ‘Flare Up’???
When you need to fix something or you are looking to do some DIY, the first thing you will need to get is your toolbox!! There is somthing so satisfying about going to get your toolbox(even if your not very good at using it lol)
Everyones toolbox is different as we all have some things we need to fix more then others. We will have our favourite tools and we will have things in there for predictable situations (superglue is mine as I’m constantly smashing things 😖 lol). So if a tool box is there to help mend things or to aid you in a new DIY project, why don’t we have a ‘toolbox’ for when our body and mind need to be fixed or encouraged?!!
In the world of chronic illnesses/conditions hearing or using the words ‘flare up’ is part of our everyday lives.. For those who don’t know what one is let me explain it in my own words/experience…
A ‘flare up’ to me and many others is a time in our lives where our medical conditions worsen or becomes harder to cope with.. It’s a time when most of your plans will change or get cancelled! It’s a time where it will normally feel like your condition is taking over! You can’t normally predict when one will come unless you know you have done somthing to trigger it (like over doing things and not pacing). I know that I get more prolonged flareups in the winter then in the summer.. I’v had my current one for nearly two weeks and it hit its peak a few days back (hopefully). Most times I can feel my flare up creep up on me! I will start getting very tiered, start taking higher dosage of painkillers and my immune system will start to slow down! My gums will start to get itchy and mouth ulcers will suddenly appear! My blood pressure will drop which means my dizziness will also increase and my brain fog will be in full swing! These are only a few signs I have mentioned, in general all my pre-existing symptoms will start to get allot worse!
When my flareup is in full swing I won’t be able to do most things, walking becomes non existent, Doing repetitive movements like chewing my food will be a huge task and picking up a glass of water will feel like I’m picking up a bag of bricks….
When I first started experiencing major flareups I didn’t know what to do!
I would normally end up in hospital for a few days. I would end up getting poked and over drugged because my observation stats would be all over the place.. I would come out of Hosp with my Meds completely changed and bruises all over! As I started getting more familer with flareups I would learn to tell the difference between what symptoms were ‘safe’ and ‘normal’ compared to symptoms that needed urgent medical attention!! This is a very important thing to learn but it will take time!! It took me a few years to recognise when A flareup was normal or if it was somthing els.
Surviving a Flareup
Everyone has different ways of dealing with their flareup because it is a very personal thing! What works for me may not work for others… But one thing we can all do is have a flareup ‘toolbox’
It does not have to be a real toolbox (most are heavy) you just need some sort of box or container! I find a shoebox works for me! The point of this box is when you get a flareup you won’t need to run around like a headless chicken you will just need to reach for this box to get some of your stuff you need to get you through this time!!! I have different boxes as I don’t have space in my flat for a bigger box…
Again please contact your doctor before you try any new products…
Here’s a list of what I have in mine!!
Personal Information!- I have typed up a cover letter of my personal information. On this it has my name, date of birth, gp details, emergency contacts, List of medication with instructions on how and when I take them, any allergies and of course a list of all my conditions including my average heart rate for sitting and standing and my average peak flow reading. I live in supported housing so it’s very important to have this ready as staff/family will need to know this information ESP if they need to contact a doctor. If you have EDS / Hypermobility you may want to write ‘please be aware that my joints dislocate and sprain easily‘ I notice that people like to just pull me up ESP ambulance staff and end up hurting me in the process…
Spare Medication! – I keep a copy of my current prescription and check its up to date every six months or when there are changes with the medicine I take! I will also attach to the prescription a list of any herbal/supplements I’m taking like my cranberry tablets. I keep spare meds in the box incase I have run out of my main supply! I will always have all my painkillers and anything to do with my asthma and POTs (pumps, steroids, peak flow meter, heart medication) in the box! I will also have my start up antibiotics for my recurrent urine infections & bladder catheters. I label all the meds in my box so if I have family or a carer looking after me they will know what it’s for. I also keep plastic shot glasses from poundlan in the box and I get the carer to put my medication in the shot glasses before they leave so I can acsess my meds easily.
Pain Management- other then medication I like to add things in my box that really help me deal with the pain!! I am allergic to ASPRIN so I have to be carful about what I use! I can’t survive without cura heat patches, tiger balm, kool ‘n’ soothe patches and my hotties microwave hotwater bottle. I will do another post later introducing and reviewing these products!!
Medical supplies- it’s can be a tricky thing to know when it is the right time to use splints. They do support the joints but sometimes it can’t make the joint worse… When I get a flare up I notice more pain in certain joints so I will always keep bandages in my box. I’m more likely to hurt myself during this time so having the bandages ready really helps! I will wrap the joint that’s playing for a day so it can rest up then I will remove the bandage and start to slowly move my joints again! I will also have cura heat arthritis bandages! You can get them for your knees, back and wrists. These are really cool because the tubular bandage will help hold your joint while the subtle heat from the patch will cover the joint that hurts!
Diary- I keep a small diary in my box to write down the dates I have gone through my flareups!! I will also wrote down what I think triggered it so I can pick up and patterns. I will also write down anything that has helped me or anything that has made it worse..
Working out- I will keep a paper of exercises I can do from my bed… I have things for when I’m at my worst to when I’m feeling abit better.. For when I’m at my worst the paper encourages me to move my small joints (toes, fingers,jaw) a bit. I won’t intentionally engage any big mucles as it is a very hard task when your at your worst but some sort of movement is better then nothing! Another thing in my box are these Cool sponges I got from hand therapy! They are used to stregthen your hands and fingers! They come in different strengths according to the colour. I like keeping one next to me in bed so I can squeeze it and keep my joints moving.
I also have a exercise resistance band (from Physio)
I never look like the cartoon below duringing a flare up. I will do the same positions as her but on a much smaller scale…. You can adapt what you do in accordance to how you feel and what you can manage! I never do anything like this when I’m at the peak of my flareup! I will only move on to exercises like this once my pain is under control or I feel ready! But it’s definitely part of my plan to get through a flareup!
(She makes it look so easy lol) you can buy the sponges and bands online to… Click here to buy one..
Relaxation- it is important to have things that will help you relax as tense mucles and sleepless nights will only make it worse! Things I have in my flareup box to help me are
- Scented tea-light candles (so I don’t have to get up to blow them out)
- Meditation cd
- Olbas oil, I put some drops on my t-shirt and pillow
- Hand cream, my hands always swell during a flareup so the cream keeps them moisturised and I get to exercise my hands without realising
- Cooling gel eye mask to keep the light out and to also revitalise them
- Earplugs, my hearing becomes over sensitive so the quieter it is the happier I am
- Massage oil that’s made for joint and muscle pain. (I use Benjamin healing oil)
- Peel of Face mask to pamper myself without moving
- Prayers and a personalised positive quotes book to keep me happy
- Lip balm to stop lips cracking
- Body spray or perfume beacuse when you smell nice you feel nice.
- Dry shampoo to avoid washing my long hair
- Baby wipes to freshen up
- Favourite songs for me to get lost in and to start moving my joints withoit thinking about it
- Reminder to look at my fav youtube channels to keep me busy and entertained
- I keep about £10 in my box so i dont have to stress about not having money to give my carer to buy me what ever i need
Food- I don’t eat well during a flareup and normally get support to come and help me make food. Even if I get some food infront of me I will still not eat well because my body it too tiered to chew and process the food so I keep a smoothie recipe In the box. My recipe has ingredients that will boost my immune system! It is also very easy for me to consume as I am just drinking it! I keep Straws in the box to so I can use them to drink my water/smoothies without holding the glass. I also keep hard boiled sweets to suck on and 100% Cacao Chocolate! It is raw chocolate, I use it as a natural antiseptic as I can’t use asprin, it’s also amazing to use as a immune boost!
Venting– I keep a note that’s addressed to ‘flare up Steph’. It just tells me it’s ok to feel angry and all the other nagative feelings during a flare up but don’t bottle it up, let it out and let it go!!! This note wakes me up and really does encourage me to let it out!
That’s all I can think of at the moment but will update every time I find somthing els
Hope this helps! Let me know what you will put in yours!
Peace and love xxxx
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