Young, Sick and Invisible

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

Guest Post: 'Sam's Story'


Red poppy

Hi, I'm Sam. I am 31 with 3 children and engaged to my wonderful half. I have Fibromyalgia - wide spread pain with an array of other symptoms. M.E (Myalgic Encephalomyelitis) - chronic fatigue, swollen glands and lymph nodes, POTS (Postural Orthostatic Tachycardia syndrome) - blood rushes to limbs and stomach causing fainting nausea and tachycardia, SVT (Supra Ventricular Tachycardia) - random bouts of tachycardia, Menieres Disease - bouts of severe dizziness, nausea and hearing issues with permanent tinnitus, MCAS (Mast Cell Activation syndrome) - histamine attacks, EDS (Ehlers-Danlos syndrome without hyper mobility) connective tissue disorder, Slight Gastroparesis - delayed stomach emptying and paralysed stomach muscles, IBS - bowel problems, Arthritis, Spine issues (straightening of lower spine, severely disc prolapse and degeneration of spine).

Ive had M.E since a child so I've always been limited in what I can do, but I do miss spending time with friends and spend my time at home working or with children. I do still work, I've worked from home for 6 years now. Worked for 5 years in insurance and now work 2 jobs dealing with complaints.

I have always been a tired person.When I was 4 I got glandular fever. I never recovered. I got a bad case of tonsillitis and glandular fever again at 11 and deteriorated. I remained stable until I had my first child and third set off even more problems.

Diagnosis was not easy for any of it. I was treated as a liar or hypochondriac for most of my life. Even now I have the same struggles. Specialists are amazing. But GP's are not so helpful. It took me 11 years to be diagnosed with M.E and 10 years for Fibro. The heart issues were blamed on anxiety until I ended up in hospital and they wrote to my GP saying I needed a cardiology referral. I had to fight to see specialists a lot of the time. My GP thinks I'm faking it all. I looked on Google, Facebook groups, anywhere I could find some help. I was very lost and didn't know what to do. I was getting worse and needed advice on how to direct my GP.

I flare all the time. It's one thing or another. Sometimes several things. Stress is my main contributor. The more stressed I am, the worse it gets. Going out and doing something makes me flare up also. I have to rest before and after. Weather can cause arthritis to flare up Food doesn't affect me.

My pain is varied. Fibro pain is anything from aching, dull pains all over to sharp, stabbing pains randomly. My joints feel like they are on fire, they hurt a lot. I have nerve damage so I have electric shock type pains down my legs or arms. Depending where the nerve is irritated. My flares can last a couple of days to a month.

Stress is my main trigger. Along with doing something like walking to shop. I take a lot of medication. Pregabalin for the pain. Cocodamol, dihydracodiene or tramadol. Usually cocodamol but stronger ones when flaring up. Anti nausea medication like cyclizine, prochloperazine and metoclopramide to make my stomach move. Naproxen or high doses of ibuprofen and voltarol gel on joints Buscopan for stomach and bowel cramps Antihistamines Betahistine for menieres disease I take turmeric, high doses of vitamins, high salt diet.

Biggest tip is work from home and make the most of your life being at home so much. Have hobbies and make friendships online. It has impacted my life an awful lot. I have no social life. I never go out or see people. But I work 2 jobs now so we have an amazing income from me. I can spend money spoilng my family and myself. We have a nice home and saving to buy our own house. I don't have many friends even online. I'm quite a loner. I seem to attract people that use me so I don't bother anymore.

It has stopped me having a career but I work enough now that we can afford luxuries. I have lost many friends. I pretty much just have my family now. I either get used or they don't want to know because I'm ill. Hard as is it is... they were never worth it.

Working and being with my family keeps me positive. I got through bad days, I can get through more. I am very positive and keep myself super busy. I am more understanding of people but I also see a lot of people arguing over who is more ill than the other. This makes me step back and feel glad I am in a good position in my life. I do love my life.

Overall, I would like to find ways to help the pain. Other than that just keep positive and work hard. Have a simple but happy life.

- 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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