The one thing I will say is that the use of our FibroMapp App is helping thousands of people understand their bodies, their patterns and ultimately gain more control. (It wasn’t until I showed my GP my FibroMapp report and that I was up on average 14x a night until she started taking me, my sleep and my pain more seriously).
That being said, my personal journey with these illnesses, as well as in working voluntarily with thousands of survivors has been, well eye-opening, to say the least. Here are a few of my discoveries:
1. Life Insurance:
Have fibromyalgia, CFS/ME, Lymes? Also have life insurance? Before you pay another penny, please, PLEASE contact your insurance provider and update them about your condition(s). Unfortunately, you may find out that when you kick the bucket, all the money you have put into your life insurance will be null and void.
I found this out (luckily) when renewing our life insurance and when I mentioned that I had fibro to the insurance broker (I did not do this online, as I wanted to ensure that things were being done properly – and I highly recommend it…).
The broker said straight away, ‘I am not going to lie to you…we are going to struggle to get you covered with fibromyalgia.’ WHAAAAAAT? I responded saying, ‘it’s not degenerative, I am not going to go into heart failure…’ you get the drift… He told me that he has another client with fibro…and there were a lot of issues.
This Can’t Be Correct…
So the next day, I thought, ‘I will just give the 2 companies I have my life insurance with a call. I called to inform them that I had fibromyalgia and to update my records please’. (Thinking that the insurance broker was trying it on with us…).
I was put on hold (thinking that they were just updating the records)…and then…I was informed that as of that moment my coverage was null and void!!! For both companies. Fantastic! Not!
The broker came back to me, and out of 10 companies he approached, only 3 were willing to cover me. The cheapest being…..£167 a month! (And that would be on top of my husband’s insurance payments!).
I now have no life insurance coverage. But what we did end up doing is upgrading my husband’s insurance for things that will cover things like loss of work/payment and several other things (I can’t remember exactly what!).
Ultimately, at the end of the day, the most important thing we realised is that it is imperative that my husband is covered for everything, so we can ensure that we are covered in the event of an issue as ultimately, he is the breadwinner of the household.
When I mentioned this issue on one of my Facebook pages regarding not being able to get life insurance, someone said, ‘I just won’t tell them’.
Unfortunately, that is naïve thinking…the first thing that your life insurance company will do on your passing will be request all your medical files. And believe me…they will be looking for every little thing to negate your policy.
This is not a little thing. And it won’t take much for them to find out – only unless you have NEVER had a consultation, fibro/CFS/ME/Lymes was never documented anywhere and no medications were given for these conditions.
Please, don’t be naïve! Know exactly where you stand with this! It could save you thousands at the end of the day, not to mention the shock of your family finding out that your coverage will never come to fruition. BE PROACTIVE!
2. Travel Insurance:
The most important thing to do is research, ask others in a similar position if they have been able to get it at a price where getting a 2nd mortgage on their home wasn’t necessary – because they are out there.
The first few places I contacted to get coverage for long weekend jaunt to Holland was beyond upsetting….The quote I was given (this was a few years ago…) was a mere £509 for 4 days!!!! (This was more than the cost of the trip!).
AND…they wanted my medical records, a letter from my doctor and and and. The second travel insurance company I contacted was no better. I figured if I was going to travel, then I had no choice to go uninsured…and these were companies that were promoting travel insurance with health issues!!!
However! I luckily contacted BUPA, who were more than happy to help me for £80 for a year’s coverage. The ‘deal’ was that they were unable to cover me for anything within the past 2 years that was on my medical history. Fair dues.
And I did wind up at the hospital (due to huge weird bruises all over my legs), and the cost was refunded by BUPA no problem. At the time, I was not aware of EHIC.
Although it is advised to always have travel insurance when travelling abroad, if you are part of the European Union, definitely get yourself an EHIC card (free). This should cover any financial outlay in a medical emergency. (Should being the operative word). Bottom line is –get it. It’s free.
Hopefully you won’t have to use it, but if you do, then hopefully you will not be out of pocket.
4. Medical bracelet/necklace:
It’s important to have a medical bracelet or necklace, not only to mention your condition as well as your medication (if there is space on it!).
If you use our FibroMapp App – your personalised list of your medications and dosages will be listed on it. It’s important to have something on your person that medical staff will know to look for. (And we all carry our smartphones with us wherever we go – hence why having the app with your meds listed, you will be able to provide this. (Always make sure you tell anyone who you are with that you have this your phone as a ‘just in case’ scenario. And consider having that and your ICE number (In Case of Emergency) in your wallet or handbag.
The last thing that you need is to find yourself in a situation where your medications are not being provided by the hospital – not only increasing pain and discomfort…but withdrawal and other serious issues!!!
As well, it is important that the hospital is aware of the importance of being comfortable in your bed and that you may possibly need more support or even an air bed (they are very comfortable and take the pressure off of your painful areas).
5. Get your bloods tested!!!
When we have conditions like fibromyalgia, CFS/ME, sadly, many investigations are not carried through (cost?!). Ultimately, meaning that you have been ‘tarred with the fibro/CFS brush’.
Did you know that there is a big crossover in regards to symptoms for fibro, Lupus and Multiple Sclerosis to name a few? And many other conditions….
Not being investigated fully can not only mean that you may be on the incorrect medications (that aren’t helping), but the fact that serious underlying conditions that can be serious/fatal. It is equally important to mention the simple things, like many of us are deficient in things like B12, magnesium, Vitamin D, potassium and many other things that are EASILY tested for. Equally, get your thyroid tested, too! And ask for a FULL thyroid workup as things can be missed otherwise.
If you have decided it’s time to take the bull by the horns and go down the route of self-management, using supplements etc. it is IMPERATIVE to speak with your GP and your pharmacist. (I always recommend speaking to a pharmacist, as they tend to be much more clued up on interactions). Just because something is natural does not mean that it isn’t going to interact with your current medications…particularly antidepressants. St John’s Wort and many fibro supplements have ingredients in them that will interact. And we are not talking about a sore stomach here – but serious stuff like Seratonin Syndrome.
If you have decided that now is time to take more control back over your life, your health and wellbeing (physically and mentally), as well as provide your medical practitioners the important information they need to form a much more comprehensive picture of your daily life – not to mention quality of life, then do what thousands of others with fibromyalgia, CFS/ME, Lupus and Lymes are doing – they are using our award winning* FibroMapp App!
Approved by the NHS Health Apps Library (which is now defunct!) and used as ‘an example of good practice’ by the Scottish eHealth NHS, our app is not only personalised to fit your needs, but is 8 apps in 1 –tracking everything from pain, mood, other symptoms, fatigue, medications (with reminder), journal and much more.
All of the data you put into your FibroMapp App is collated into an easy to read report. The app is suitable for ALL complex conditions where chronic pain plays a role (as well as many other symptoms!). Helping you to gain a better understanding of your body and patterns, as well as allowing your medical professionals an opportunity that is often missed of pinpointing concerns. (When you have an illness that has over 200 co-existing conditions and a 10 minute doctor’s appointment a LOT can be missed!).
*FibroMapp App was voted as Best Fibromyalgia App by Healthline in both 2014 and 2015! Yay us! 🙂
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