Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Natasha's Story.'


Field sunset

I'm Natasha, I don't use my husband or children's names on public forums but they all have nicknames. My husband is "Bumble Bear", our son is "Little Bear", our eldest daughter is "Little Squirrel" & our littlest girlie is "Ladybug".

I blog at meandmanyblessings.blogspot.co.uk

Tweet at https://twitter.com/NVintageCherry and my Etsy shop is https://www.etsy.com/uk/shop/VintageCherrys

I have Fibromyalgia and ME, both are conditions which cause chronic pain and fatigue among many other symptoms. They are similar in many ways so it can be hard to know which condition is causing which horrible symptom. Some of the common symptoms and related conditions I suffer are:

- Nausea

- All over body pain

- Itching

- Burning or ice cold sensation on my skin

- Rashes

- Sore throat

- Sore and swollen glands

- Stomach aches

- Earaches

- IBS

- Tinnitus

- Vertigo

- Insomnia

- Weakness

- Fatigue

- Headaches

- Costochondritis

- Body temp regulation problems

- Sensory sensitivity

- Low immune system

There are more and new symptoms pop up with each year that passes.

I became ill a good few years before I was diagnosed but before I fell ill I worked, I loved to do courses in my spare time, either at college or online uni or college courses, short courses, tutorials and so on. I loved reading and would whizz through books each week. I socialised regularly, had friends over for dinner or to stay, went on dates with my husband, babysat for whoever needed it, shopped too much & enjoyed cooking.

I stopped working when I had my eldest children, the plan was to get back into work in some shape or form when they were bigger, but my symptoms started soon after and it became apparent that I wouldn't be able to go out to work at all. My conditions were always too unpredictable to be able to guarantee I'd be well enough to work even a handful of hours but as I've become more unwell, the chance of working outside of the home is nil.

I learnt how to crochet a few years ago and have recently opened an Etsy shop selling my makes. I can be flexible with my hours and work from my bed. I'm still massively restricted so can't put a lot of time into this so it's never going to be a big money maker. My reasons for starting up were to regain a bit of dignity & self-worth and hopefully pick up a bit of pocket money to treat my family on my "good days".

In all honesty, I don't know when I first developed my illnesses. Looking back I believe I may have had mild ME going back to my late teens. I'd have "spells" of feeling unwell for no obvious reason, I always picked up anything going around. I believe my fibromyalgia started after the birth of my first child, in late 2009. My energy just didn't pick up, I put it down to a stressful pregnancy, traumatic labour and surgery plus having a newborn, but it never got better, I had widespread pain and as the months passed more and more symptoms appeared. I had swine flu in 2010 and that was when my health spiralled fast. I believe this is when my ME turned more severe.

I was diagnosed with fibromyalgia in 2013, so it took a few years and it wasn't easy to get. GPs would give me lots of possible reasons for my symptoms, I had several blood tests per month, tried everything they gave me or told me to do and was eventually referred to a rheumatologist. They all seemed very reluctant to make the diagnosis but I just wanted to know what was wrong with me. I was told by a few different GPs that they just don't get the training on fibro, ME and other chronic pain conditions so it's very hard to diagnose them. I had one GP tell me "If you would think more positively you'd not be in so much pain..." Which was a real kick and made me lose a lot of faith in medical professionals dealing with my particular issues. The same Dr told me I should come off of Tramadol (at the time I was on the highest dose) & naproxen and "try paracetamol". Again this was upsetting as anyone with chronic pain knows paracetamol may as well be Smarties. Thankfully I now have a wonderful GP who works with me to help as best she can, I'm truly thankful for her.With my symptoms worsening each year I was referred to a pain clinic in 2016, where they agreed with the fibromyalgia diagnosis and also diagnosed me with ME.

Natasha

Searching the internet in relation to diagnosis, I tried not to specifically look at conditions I thought I may have. If a new symptoms came up I would search for that symptom and see which conditions it came up with. Every time, fibro or ME were in the top results of Google search. I did join some groups for people with fibro and ME after diagnosis but initially, I was looking primarily for how to get better.

Gosh, describing a flare is a hard one. my "normal" state is wide spread pain, fatigue, aches, rashes, sensitivity to touch, sound, temperature, light.The first warning I get that a flare is coming is a sore throat followed by sore glands and earache. Once I'm in the flare the pain is horrendous, even by my standards. I take my painkillers as often as I can, without the smallest bit of relief, my skin will feel like its been burnt on one part of my body and like I have ice water running through my veins elsewhere in my body. I can't concentrate on anything, there is little point talking to me unless there is no other noise & you can talk slow &repeat yourself regularly. I can't sleep even though I'm exhausted. If I do fall asleep I cannot wake up, even if I really try. It's horrible. I'll try to wake myself but it's like my body just won't wake. The pain and fatigue are out of this world. I get cramps, sickness, dizziness.

I have so many different types of pain but I'll try describe a few. One type of pain I get in my legs is how I can only describe as similar to if you wore new high heel shoes out on a night out that turned into a weekend of serious dancing then finally took those shoes off. The aching in your legs and feet that makes you wonder if you danced the equivalent of a marathon.

As I said above, some pain feels like burning, like some bad sunburn or the scald from kettle fresh hot water. Other times it's like ice water running through my veins, the cold burn under my skin that no amount of heat pads, hot baths or hot water bottles will help. Other pains are like bad bruising, swelling or as if there is an infection somewhere within my body.I describe my usual state of ME as feeling like I have the flu and have been awake for 3 straight days and nights.

My flare time varies. If I listen to my body and do everything I can to rest and de-stress, I may get away with a flare lasting 3 days. If I'm too late or unable to rest, if I have any hint of a cold or bug or am stressed or run down, a flare will usually last a week, often up to 2 weeks. I'll be entirely bedbound, in pain that nothing will relieve, I usually have a huge dip in my mood, I feel down and struggle with my emotions. It's not a nice place to be.

I'm not really sure that I do cope with flares. I just kind of try to wait it out without getting too down about it. My life is restricted even when I'm not in a flare, probably bedbound 90% of the time anyway and am always in pain, flares are just an extra world of pain. I watch boxsets and films, chat with Twitter friends, crochet if I can and wait for a better day to come.

My main triggers would be temperature and weather changes, stress, bugs etc (I call this muggle sickness!), overexertion (which for me would be anything more than being out or busy for 2 hours a day, 3 times a week, (to clarify I usually leave the house once a week for 2 hours but the other few hours a week would be on cleaning or tidy the house, general living stuff), lack of sleep. So many things, sometimes nothing obvious.

Natasha wrapped up in blankets

I take tramadol on prescription, paracetamol & ibuprofen as needed and I also use CBD oil from Holland & Barrett, turmeric capsules, Epsom salt in the bath, vitamin D spray & multivitamin tablets.

I used to take codeine, which I feel was more helpful in targeting the pain than Tramadol, but I'm currently unable to take it. I've also been prescribed, amitriptyline, which made me feel worse, naproxen, which helps with some symptoms but unfortunately increases my stomach aches and sickness, and various anti-depressants which again made me feel worse rather than better.

My biggest tip would be to find a network of friends who can relate to your new normal. Twitter has been a real lifesaver for me. Talk about how you are feeling, don't suffer it alone.

It's also very important not to blame yourself or feel guilty for being ill, it can make you feel so much worse, doesn't help anything and is absolutely not a burden you need.

I'm not the same me anymore, I can't cook, bake, clean, do the weekly shop, rarely go out without another adult present, I'm in bed or at least in my room most of the time, a good day is getting out for 2 hours. I do, however, appreciate every little positive thing in my life. If I can get to the supermarket with my husband even just for a quick top up shop I enjoy it. Trips to the park or soft play are like the best thing ever. I've also become more resourceful. I do what I can from my room. My children come up and we play games, read, do workbooks, watch films, research things on the internet, do online courses together. I don't take anything for granted.

I mostly covered this above but I'll tell you a few more things that are difficult now that I have chronic illnesses. I cannot do anything without planning it properly, If I want to go out I need about 24hrs at minimum to plan ahead, to rest up enough, work out how I'm getting anywhere, how I'll get back how will I make sure I have everything I need, who will be there or nearby if I fall ill need to go home or if something else goes wrong.

I don't really socialise anymore, I have one friend that I see a few times a month but that's it really, The thing I miss most is dating my husband. I would love to spend more time with him one on one. Evenings are no good as I'm in bed by 5 pm, 7 pm at the latest and of course, with the financial hit life takes when one of you is chronically ill, we don't really have the money to go out for lunch or to a film. I miss that the most.

Dark room, tv and loads of blankets

I've lost most of the friends I had before becoming unwell. I think people either find it frustrating that I'm so restricted or they get fed up with it. It's understandable but hurtful none the less.

There has been an impact on the closeness to some family members too, for similar reasons. I've been told by some that others have commented on how regularly I "moan" about my ailments or the things I no longer do which in their eyes, I should be doing. It's very sad.

I've certainly become more understanding! I take the time to try to understand how people are feeling and make sure to offer support in any way I can.It can be very hard to stay positive when there is so much I want to do but can't, My children are my everything so I try to stay positive for them and put all my energy into giving them a happy, healthy, fulfilled life. I can't always join them on outings (my husband takes them out a lot) but I love it when they come home and tell me all about it, showing me their photos and souvenirs. I do projects with them every week, they tell me what they want to do and we do it. Being home all day wasn't in my plan but it's allowed me to be here for my children 100%. I educate them, play with them, listen to their worries, make them laugh, join in their hobbies & make memories every single day of my life and I wouldn't change that. I count myself as blessed for having this time with them.

I hope that I will get some improvement in my symptoms. I don't expect to completely recover but if I could be well enough to get out 3-4 times a week that would be amazing.

I would love to be in the position to focus a bit more on my business and make a reasonable amount of money.

I want to get back a regular date night with my husband.

I want to make a difference in people's lives.

I want a cure or proper treatment options for chronic pain & fatigue. But most of all I just want to be able to be a part of my children's lives and one day my grandchildren's lives.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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