It’s been a while! Nearly 2 years since I last updated my blog & thought it was about time I reconnected & updated you all on how I’m getting on with my journey through TSW.
First of all let me explain where I been for 2 years! The last time I posted on here I was unaware I was 3 weeks pregnant! I was only 9 months into my TSW journey & still enduring full flare ups, severe depression & anxiety, & had no idea how I was going to cope with it all! However, I’m not sure if it was being pregnant or just having a new focus, but my skin was the clearest it’s been in years while I was pregnant. My legs went from being swollen, sore, red raw, scabby & flaring constantly, by July (7 months pregnant), 1 1/2 years into TSW, I was FINALLY comfortable in dresses & sandals & my legs & feet have not flared up since then!!! It’s amazing the difference now. Still not comfortable enough to have my pins on display publicly as they’re very pasty & still full of scars but I can’t remember the last time I scratched my legs or feet. Honestly, it sounds silly but that’s SUCH A BIG DEAL!!!! It’s HUGE! It’s such an achievement!
However, I’m nowhere near cured, healed or otherwise. There’s still stings & twists to this TSW journey…
At 32 weeks pregnant (7 weeks before my due date) I woke up on the Friday morning knowing something was wrong with my baby. I had weird pains I couldn’t explain that weren’t going away & hadn’t felt movement from baby all night. I called the labour suite & they told me not to panic but to come in when I could that day to be checked. I went in that morning & had checks done, baby’s heartbeat was fine & they wanted to send me home. I refused & said I knew something was wrong & wanted a scan. After giving in to my pleas & many tears, they did a scan & found I had a tear in my amniotic sac & that baby had stopped growing at 24 weeks, was barely 2lb & was receiving no fluids. They wanted to do an emergency c-section by Monday morning. They explained I would have to have TWO STEROID INJECTIONS to help babies lungs develop as much as possible over the next 48 hours before they performed the c-section. I had my first injection that afternoon, but that night whilst I was hooked up to monitors, & told to lay in an awkward sideways position to give baby the last bit of fluid I had left to survive in, I watched & listened to the monitors as my baby’s heartbeat gradually reduced & slowed. It was by far the scariest moment of my life. They decided they had to operate the following morning & at 9.41am on 8th August 2015 I gave birth to my beautiful miracle Marley weighing only 2lbs 5oz.
I was taken to the maternity ward to recover where I was then told there had been a flood in our hospitals NICU & that Marley would have to be transferred to another hospital’s NICU ASAP. I was so scared, but thankfully he was moved to a hospital not too far away & after spending 5 weeks in NICU we were able to take Marley home. He’s now a very happy, healthy 17 month old. Still very small for his age but a clever lil chap, I’ll tell you more about him later.
During this crazy, stressful time my skin went into haywire. Of course emotions are a trigger for flare ups & the fact I had a steroid injection I felt set me back to Day 1 again. My legs & feet never flared again as I said but it’s now the top half of my body that struggled. My face & neck were constantly red raw, oozing & sore. My hands, oh, my poor hands. They were an utter mess. There were days when I would go to see Marley in his incubator & not even be able to have that minimal contact we could have with our premmie babies (through the holes in the side of the incubator) I couldn’t stroke his little head, or hold his tiny fingers where my skin was so red raw, oozing & blistered. I feared I would give my son an infection, that I would pass on something nasty. It was heartbreaking. I was an emotional wreck at that time. I would put on a brave face & would try & have a laugh with the nurses & make the most of the situation but not only could I not just take my baby home & love & care for him I couldn’t even touch him some days where my skin was so horrendous. I wore bandages as much as I could, caked myself in cetraben emollient cream & took 4 antihistamines a day, & just cried, & cried & cried at times.
My skin on my face, neck & ears then from August 2015 – February 2016 (6 months) went through mini flare ups every other week. They would last 5-10 days at a time & would consist of my skin feeling hot, bubbly & itchy for first day or two. Then bright red, blistered, oozy & sore which could last from a couple of days to a week, then tight dry & scaly, flaky skin, very itchy at this point (if I catch myself scratching can set myself back to day 1 again!) which lasts a couple of days but then I have the odd day or two where I have ‘PERFECT SKIN’… I call it that as my face feels normal, no itching, no red patches, no flaky skin, no oozy patch, no scabs. Just clear, happy skin. I know I’m having a ‘PERFECT SKIN’ day as I get my iPad out & enjoy taking selfies with Marley, it’s been a long time since I felt comfortable enough to do something as basic as a selfie, but for someone who (a couple of years ago) wouldn’t want to leave the house for fear and anxiety of the hoards of people that would make comments like “oh, you’ve caught the sun!” & “my sister had dermatitis on her elbows til she tried so-and-so”, or just give me weird looks or even just stare at my face when it was really bad (and still get now when I’m in the worst days of my flare ups) I now enjoy sharing pictures & selfies on social media & feel so much more comfortable in my skin mentally too, but my confidence returns when I’m having a ‘PERFECT SKIN’ day, if that makes sense!?
My hands & arms again gradually improved after Marley came home & we started getting into a proper family routine & by October 2015 – February 2016 I would have mini flare ups, nothing like I was having before I had Marley or whilst he was in NICU but I would have the ‘red sleeve’ appear, & then the same process as my face & neck. The flare up would follow the same pattern, red raw, blister, ooze, dry, flake, repeat… the one big difference is I now prefer having my arms out & giving them air, before I would cover them up but now find covering my arms more irritating, it’s like they get too hot & then the itch starts & then that brings on the scratching cycle & boom! You’re in a flare up!
By February 2016 Marley had started getting baby eczema. I feared he would get eczema but I was glad I had such a knowledge, & experience of living with eczema & more importantly the dangers of topical steroids. What I wasn’t prepared for was the battle my partner & I would now face as parents with a child with eczema, & tackling paediatric dermatologists! There’s so much to say, I’ll write a separate post on that whole subject in the next week or two but the short story is we ended up using topical steroids on Marley for 2 months. (Yes, shout at me, throw things, get angry, gasp in shock. I know. It hurt me too, as I say, I’ll explain more in a separate post!) needless to say, me applying steroids to Marley for 2 months effected me MASSIVELY.
Since stopping using TS on Marley in July 2015 I’ve gone through several long, painful flare ups effecting my skin on my arms, hands, neck, ears & face. I’m adamant I’ve been worse in those areas alone as they are the only areas exposed to TS when I was applying it to Marley with my hands, he would then touch me, cuddle with me etc & now my skin and body is again feeling a withdrawal all over again.
Along with the horrible flare ups with my skin I was also suffering with –
– Unexplained aches & pains. It starts in the morning with a dull burning pain in the middle right of my back, then throughout the day the pain spreads & moves depending on what I have done in the day. On a day spent at home, no housework, doing little as possible I hurt in my back, hips, & shoulders by the end of the day. If I then add a task be it, housework, shopping, taking Marley to soft play centre etc, the pain then spreads & it gets more painful & severe & it takes me longer to recover. The pain constantly moves & except for the burning pain in my back I never know what’s going to hurt.
– Pins & needles in hands, feet/ankles. I’ve had the tingling sensation in my hands throughout my TSW, but this past year it’s gotten worse. I can have good days where I just get pins & needles/numbness in my hands when I wake up first thing, other days I get attacks of it on & off throughout the day, & sometimes in my feet & ankles too when I sit down (typing this now I have it slowly going numb & tingling on my left hand & wrist) the worst part is the lack of grip I now have with it. Again good days I can brush my hair, pick Marley up, do some washing up, etc. But I get random moments of losing grip (recently dropping loo roll down the toilet as it fell out my hands, dropping my iPad on the floor when I go to pick it up, having to use both hands to hold a mug of tea steady), I can’t open bottle tops or screw caps either at times which then leads me to have a toddler like tantrum!!!
– Dizzy spells & feeling light headed. I can be playing with Marley or just sitting on the sofa & go to stand up & get really lightheaded & dizzy. Takes me a few seconds to refocus & adjust before I can sit down or walk to where I was intending to go.
– Forgetfulness & a ‘haze’ that comes over me. This is probably the biggest issue in my relationship at the moment. I feel like I’m going crazy sometimes. My poor partner has to bare the brunt of my health issues & this is really getting to me. He will tell me something, I know I’ve listened, I’ve spoken to him about it, yet 5 mins later or when he mentions something about it again I’ve forgotten what he’s said & ask the question again. He gets so frustrated as he tells me he’s already had that conversation & tells me what I replied but I don’t remember. Or he will be talking to me & my brain suddenly switches off. He goes almost into a murmur in the background. It’s so frustrating & when talking to other people can be SO embarrassing as I seem disinterested or not listening if I have to ask them to repeat themselves. I have also started to get words muddled when I’m talking (usually worse if I’m anxious or upset whilst I talk) but I used to consider myself a confident person, didn’t have problems talking to people be it face to face or on the phone. Now I hate it as I get so frustrated when I’m talking I’ll forget what I was saying or just can’t find the words to say what I mean. Drives me mad!!!
– Headaches – get terribly painful headaches every couple of weeks. It’s always the same kind of area in my head (left side just above my eye) that has a constant searing throb, no matter what painkillers I take it just goes away in its own time be it a couple of hours or a whole day, I can’t handle too much movement, light or sound when I have one and just have to try & sleep it off.
– Lack of energy/sleeping problems. I constantly feel tired. I mean, constantly. No matter what sleep I get 4,8,12 hours sleep it doesn’t matter. Some days I have more energy than others, again that depends on what I’ve been doing the day before or earlier. If it’s a simple day at home, I just feel tired & may sneak a half hour nap in when Marley goes for his but if I’ve been shopping or done housework etc all I want to do is lie down & sleep for the rest of the day. (Which obviously isn’t possible with a 1 year old!)
– Feeling Emotional/Mood Swings. Lastly I think this is tied to my anxiety & depression anyway but I have terrible mood swings. I can cry at the drop of a hat some days & can’t quite get a hold of why, then other days (again my poor partner bares the brunt of it) I can just snap & get so angry & just start screaming (again, this is usually after a frustration of dropping something for the umpteenth time, or forgetting something I went upstairs for etc).
A few months ago, after suffering with so much pain & knowing I wasn’t right for so long, I went to see my local GP. After several blood tests showing nothing, an MRI scan, & meeting with a physiotherapist, I was diagnosed with fibromyalgia which is a chronic pain illness. I believe this was caused by the crippling effects of TSW. They say fibromyalgia can be caused by a traumatic event (originally thinking Marley’s birth was to blame) but when I pieced together all my symptoms I had been suffering with the 2 main symptoms since starting my journey through TSW, severe pain in my lower back & extreme lack of energy/feeling tired all the time.
So now I am starting 2017 with a new focus in life. I want to be as healthy as my body will allow. I want to ditch the medications, tried so many pills this year none have worked. I need to focus on being healthier with my food and exercise choices. Know when to slow down when I need to recover & heal. Don’t beat myself up when my next flare up arrives after I’ve enjoyed some ‘PERFECT SKIN’ time. Know that a flare up will happen, accept it, understand it’s apart of my healing process & things WILL improve. My legs are my proof of that, & most importantly, enjoy every moment of being a mum!
Here’s some pictures of my progress & I promise I’ll update you all again soon! X