I Thought Being Around Would Make You Feel Worse

Physical and Mental Health / 7 years ago / RelentlesslyPurple
I Thought Being Around Would Make You Feel Worse

I thought being around would make you feel worse. Actual words I never thought I’d hear from a friend. It’s funny what people assume when you have chronic pain. How could having a long time friend message me or visit me make me feel worse than being pretty much ignored for 3 years?

It got me thinking though, is that what people really think when you have chronic pain or any kind of debilitating illness? Do they really think we just literally want to sit alone all day not talking to anyone at all? Do they really believe we will feel worse chatting to someone? As I told my friend, I am still able to chat and have a cuppa. Isn’t that what friends do?

It would be lovely to have a friend round occasionally to distract me from the pain. I live 5 minutes away from our nearest town. I can (slowly) walk to a café or Subway for lunch and a chat. How even sending me messages would make me feel so awful. I’m in pain, not dead!

Yes, I struggle with going out both physically and mentally but it’s a bit different meeting a friend you have known for over 10 years, why on earth wouldn’t I want to at least chat on Facebook or meet up? I chat on twitter a fair bit, admittedly there are day’s I’ll just like everything but even then it’s nice to be included.

To think someone would think it would make me feel ‘angry’ that I couldn’t do stuff like before simply by seeing a friend is honestly ridiculous! If I was in hospital with a broken bone or an infection people would come to check I’m ok so why because I live with this pain day in day out would someone honestly think it was best to just ignore me completely!?

I actually felt worse after that text in all honesty. It came across very much as now she’s hurt herself and lonely I should forget the fact she’s ignored me. Now she’s struggling and needs a friend. Normally I’d be sympathetic but in this situation I simply can’t be. I haven’t been anywhere, I’m always reachable and she regularly drives past and pops up as nearby on Facebook.

If you have a friend with any kind of chronic pain or disability please STAY IN TOUCH!

Go see them, yes it’s hard adjusting but it’s much easier with extra support and a friend by your side. They may cancel plans like going out because they feel rough, that fine. Go buy a ton of yummy junk food or order in a takeaway and sit with them. Watch a film, chat absolute rubbish with them, I guarantee you’ll be making them feel much better and more able to cope with their pain.

 

An Update On My Brother

Family / 7 years ago / RelentlesslyPurple

I figured my readers deserved an update on my brother since a lot of them read about my worries last week when my brother ended up in A&E with a lung infection and suspected Lupus last Saturday.

Checking In

Once he was home I carried on worrying about him and checking up on him regularly. I told him off for walking to town and ordered him to wear extra layers when he had no choice but to go (WE NEED A CAR!) for electric. Luckily by the 3rd day of antibiotics he was beginning so breathe easier and walk a little further but still felt very drained.

I went to see him and check he was really Ok on Friday and was so pleased to see he was looking and sounding a bit healthier! I dragged him out for some lunch before we went on our mission.

Registering With A GP

We have been trying to register him at a GP for well over a year but each one wants his previous GP address which he honestly can’t remember. His social worker gave him the wrong address in the Summer when she signed him off so we were a little stuck. With a whole heap of other stuff going on it was something we kept forgetting to chase up again.

Having been told in A&E they suspected Alex has Lupus and he urgently needed to get a referral to a Dermatologist it was the kick up the arse we both needed to finally get it done. Alex mentioned in A&E he has been struggling to get registered with a GP so they gave him his NHS number.. at last!

So on Friday our main mission was to get him registered and we FINALLY managed it! It’s literally just across the road from him and open later than most which is perfect for him. We both walled out of that surgery high-fiving each other and cheering! At last mission successful!!

He has to call back Wednesday to ensure he’s added to the system properly. After that he will be booked in for a new patient check. Then he can book an appointment with a GP and get a referral to dermatology. It will take a few weeks but he’s literally been without a GP for years now so a few weeks aren’t too sad!

Catching Up

When we got back to Alex’s I showed him my previous post, I admitted he’s mentioned a fair bit on my blog but nothing too personal which he didn’t mind at all and the photo’s of us he absolutely loved! Especially when I explained why I chose the ones I did. He decided we needed to start taking more of us together, another little tradition to add to the list, so I thought I’d share them with you all!

  • Alex & Ember
  • an update on my brother

Check out that smile! (How similar do we look too!? haha!)

We chatted as we usually do about our past, the present and the future. It was lovely to see he is finally feeling positive and making plans. He’s come such a long way over the last year! A lot has gone on that I haven’t mentioned because I believe that’s his personal business but I am so proud of him!

An Update

He is coping so much better, he realises now he is far from dumb although he struggles with things. He realises now it’s due to not being taught the basics. Things like how to clean, how to cash a cheque etc. have always been stressful for him. He asks for help when he needs it instead of just getting frustrated with himself now. It’s lovely to see!

The last week he’s felt very depressed but he’s dealt with it well, popping to his neighbours for a chat & inviting a few friends round. Normally he would shut himself away and end up feeling a lot worse. I’m so proud to hear he had realised he felt low and did something about it before it got worse.

Sleep Issues

Alex has always struggled with sleep and fell out of routine over the last few weeks. I gave him the Philips Alarm I was sent for #BlueMonday from PowWowNow to help him keep it up. As I explained to Alex, I have children who make sure I’m awake each day no matter how I feel. I’m sure the Alarm will benefit him much more than me! (Thank you PowWowNow)

Alex suggested writing a review of the Alarm for me which I think is a brilliant idea. It would be great for other’s to see how he gets on and what a difference it makes. Maybe it will help someone else out too! So keep an eye out for his guest post at some point over the next month or so. Since his stay in hospital he’s waking up early and has been waking before the alarm starts. So hasn’t had a chance to test it out yet. Typical 😉 haha!

All in all Alex is doing much better, his lung infection seems to have cleared up well. Thank you for all the support I’ve had from my readers. It’s been lovely to get comments checking how he’s doing and suggestions to help him.

New Ozeri Frying Pan & Pepper Grinder? This Call’s for Steak!

Food / 7 years ago / RelentlesslyPurple

Steak is the first thing I thought of when we recieved a new pan and pepper grinder. We recieved an Ozeri 26 cm Green Earth Frying Pan with Textured Ceramic Non-Stick Coating from Germany (100% PTFE and PFOA Free). We also recieved the Ozeri Graviti Pro Electric Pepper Grinder, in exchange for an Amazon review. As soon as they arrived all I could think about was steak so I sent the Mr off to the shops.

New Ozeri Frying Pan & Pepper Grinder

  • Ozeri Frying Pan
  • Ozeri Pepper Grinder

Whilst he was gone, I looked over the details of the products and took a few pictures.

Utilizes GREBLON ceramic – an ultra-safe ceramic coating from Germany which is 100% PTFE and PFOA free (no heavy metals or chemicals).

  • Innovative textured pan surface delivers unprecedented non-stick performance without releasing harmful fumes or toxins at high temperatures.

  • Scratch-resistant 100 percent ceramic coating making it super easy to clean.

  • Made out of durable heavy-gauge pure aluminum with no heavy metals or harmful chemicals.

  • Boasts a comfortable heat resistant silicon coated handle, and a magnetized induction stove safe base for rapid heat transfer.

This Calls For Steak

I couldn’t wait to see how the Mr got on with using the pan. The first thing I noticed was that the steaks cooked evenly and a lot quicker than our usual pan. The steaks didn’t stick to the pan at all during cooking thanks to the non-stick coating. Using the Ozeri pan, both steaks turned out lovely and were nice and juicy on the inside. The pan is extremely easy to clean which I was pleased with as it’s a job I HATE.

Steak

The Mr used the Graviti Pro Electric Peppermill to season the steaks as they cooked. It worked as it is supposed to and ground the pepper corns finely. It’s pretty stylish too!

Gravity Operated. Simply flip or invert to activate for effortless one-handed dispensing of your seasonings.

  • Durable eco-friendly ceramic mechanism easily grinds peppercorns, salt, and spices.

  • Seasons accurately with adjustable ceramic grinding mechanism that adjusts from fine to coarse.

  • Features a top-mounted grind adjustor that never leaves a trail or mess, and an ultra soft textured non-slip grip.
  • See-through container makes monitoring pepper level easy and reveals the grinding action. Satisfaction Guaranteed.

We’ve used these quite a bit a tested the pan out with eggs, veg, chicken etc and it’s absolutely brilliant!

Steak Dinner

Although writing a review on my blog wasn’t required, I know some of my readers will appeciate this. As I’m sure you’ll all agree, a well cooked steak is important news to share! (Even if most of you disagree with how well cooked I have mine haha!)

(Almost) Mess Free Painting To Occupy Toddlers

Crafts / 7 years ago / RelentlesslyPurple

I’m sure there are plenty of mum’s out there wishing there was mess free painting to occupy toddlers. It can be stressful getting the paint’s out. Whilst I don’t mind the actual mess or painted hands, I dread washing Izzy’s hair most of the time, although she is getting better it can be hell if she doesn’t listen. It’s difficult enough struggling to reach over to do her hair without chasing her around the bath too!

Izzy has been asking to paint over the last week and I’ve avoided it for that reason but today she came wandering in with a book I picked up quite a while a go and completely forgot about and asked to use it. The are ‘Magic’ Paint books, painting fun with none of the mess!

Mess free painting

These magic painting books are absolutely amazing, I can’t believe I forgot they even existed! I’m sure a few other parents have too so I figured I’d remind or introduce my readers to them so their toddlers can do some painting which is stress-free for mums and dads.

Having had a look through my stack of craft books, magazines, print-outs (I really must get a new printer!) I discovered we had a few different ones I’ve picked up. The dinosaur and farm animals ones we picked up from Wilko.

(almost) mess free painting

Keeping toddlers occupied

I’m so pleased we found these as Izzy absolutely loves painting and it’s kept her happy with the only possible mess being water and a tiny bit of the colour. It was easily cleaned off with a wet wipe, which Izzy also discovered can be used to ‘paint’ with haha! I even had the time to write this post in between chatting with Izzy and topping up her water pot.

Izzy loves discovering each colour and it’s really helping her fine motor skills. She tries so hard to keep it in the lines and rinses her brush each time. It’s a great little cheat that works for both of us although admittedly she did still get a little colour on her face.

I’ll definitely be getting these out a lot more and buying more. Eva came home from school and joined in too! It was lovely to see them both absorbed in an activity. I have been slacking majorly lately not just on the blog but with doing things with the girls too so simple activities like this are great! It got us chatting about colours & different shapes, Izzy loved naming everything in the picture too!

 

What do you think? Have you used these before?

Lung Infection & Lupus – Worrying About My Baby Brother

Family / 7 years ago / RelentlesslyPurple
My baby brother

I’ve been worrying about my baby brother over the weekend. Most of you will know from some of my posts and tweets Alex is a big part of my life so to get a panicky call from him on Saturday and hearing him seriously struggling to breath left me worrying, A LOT. As well as struggling to breath he’s had these strange ring rashes appear which look very much like Lupus.

Alex had tried and struggled to go to his nearest shop and rung me worried, he didn’t want to walk to the hospital ‘in case it was a waste of time’. He suggested waiting until the morning..  So I put my Mummy voice on and insisted at the very least he call 111 for some advice.

Panicking

As soon as I put my phone down I began to panic, Alex doesn’t have the greatest immune system and has weak lungs from being born prematurely, he also suffers from Asthma. Temperatures were below 0 and I was worried he would get worse but luckily he did what he was told and called 111. An ambulance was sent out to him and the paramedics decided he needed to go to hospital. His heart rate and irregular breathing was concerning them so they insisted he was wheeled to the ambulance instead of walking which he wasn’t too impressed with.

He text me to let me know he was waiting for the ambulance then understandably I didn’t hear from him for over an hour. I spent the entire time unable to concentrate on anything, constantly checking my phone for an update. Eventually Alex let me know he had bloods taken and had ‘things put all over his chest’ (ECG) and he was scared. I tried to distract him whilst he waited, chatting about a documentary I was watching on the London Graveyard’s by London Liverpool Street Station.

After some rambling back and forth he eventually got his results. It turned out Alex has a lung infection and suspected Lupus. He called me as he walked home, struggling to breathe. Hearing him so vulnerable, crying from the pain, being so scared alone was horrible, I just wanted to be there and give him a hug. He was given antibiotics for the lung infection and his NHS number (At last!!!!) so he can finally register with a GP and get a referral to a dermatologist to confirm the suspected lupus.

The two major symptoms are joint and muscle pain and an extreme tiredness that won’t go away no matter how much you rest.

Rashes, depression, anaemia, feverishness, headaches, possible hair loss and mouth ulcers may all be part of the pattern of lupus.

Noticeably, whilst the two major symptoms are invariably present, people with lupus can differ greatly in their symptoms and how the illness can affect them – life-threatening for a few, very mild for some.

We are all extremely worried about his health, he has had all the symptoms that point to lupus for a while now. This worried me just as much as the lung infection. He is my baby brother and I hate that I couldn’t be there with him. Not having a car is becoming more and more stressful, things like this happen and I’m left helplessly worrying instead of being there to look after him. I’ve always tried to look out for my baby brother, I remember holding his tiny little hand through the incubator for the first time. He was so tiny and fragile and spent a long time in NICU so when he finally came home I couldn’t leave him alone.

I fed him & changed him as a baby, I taught him his first words, how to read and write. He learnt his first colours from a song I made up with a row of coloured teddies over his bouncer. Red teddy, yellow teddy, green teddy, blue! He may be my baby brother but I guess in a way he’s always been my baby too which is why I’m so protective of him. To me he’s just like the girls, he’s a huge part of my world and I always feel the need to care for him so times like this are extremely tough.

Brother & Sister forever

Alex and I had an unusual childhood, he was in care from 7/8 years old but this has never stopped us having a strong relationship. We have only lost contact once for a few months when I left home and went into a women’s refuge, I didn’t have any contact details for him but eventually we sorted it and contact resumed. When I had Eva he had been sectioned and was in hospital after several suicide attempts. I knew I had to jump in some how and bring some normality back to his life so I arranged home visits, had visits from Social services etc. to ensure our flat was safe for him.

Since then we have kept in regular contact and gone through a lot together, I know he almost see’s me as a mum to him too and with him not talking to ‘her’ right now means I am pretty much all he has, knowing that and not being there was so difficult. We were brought up to avoid Dr’s and Hospital’s, terrified that anything and everything would end in needles.. no wonder I had a needle phobia! Knowing he was sat in the same A&E room where he sat as a child being told off for having a broken leg worried me, he’s also overdosed several times and ended up there too. He suffers from PTSD and I was terrified this would set him off but distracting him did seem to help.

Going forward

I’m hoping the antibiotics help and his lung infection goes away. I’ll be focusing on getting over to him as much as I possibly can over the next few weeks to help get him registered at a GP. We also need to get his referral for a dermatologist to find out if he does have Lupus and what we can do to keep him as healthy as possible. Lupus is extremely complicated and Alex is understandably terrified as he has no clue what’s going on. He’s had so many of the symptoms that it really is worrying but I intend to look after my baby brother as much as possible!

Have you ever been in a similar situation? Do you know anything about Lupus that may help? Please do leave a comment if you have any experience with Lupus.

​How To Get Cheap & Free Baby Stuff

Family / 7 years ago / RelentlesslyPurple
Cheap baby product

It is never cheap to prepare for the arrival of your newborn but if you know where to look you can easily get the help you need. I recommend browsing through reviews of baby monitors, pushchairs, baby and child car seats, and more before making any large purchases. 

Cheap baby product

Research

You will discover that the differences between the low-scorers and the highly recommended products are huge and that products priced higher are not necessarily the best. Reading through reviews before making a purchase means that you will be investing in the best products possible for both you and your newborn. 

Freegle and Freecycle are two free-to-use websites for cheap and free baby equipment. They comprise of networks of local groups that people use to give away things as opposed to simply throwing them away. The amount of baby stuff available on the groups varies but you can find some amazing stuff. You can even post a ‘wanted’ request if you are in search of something specific.

Hiring

Even if it is not free, you can consider hiring baby equipment. For example, you can hire pushchairs and other items from NCT, the Parents’ charity. However, check out reviews of different pushchairs before you choose a particular model to hire. It is also important to undertake safety checks before you start using. You can even use an expert guide to find the best pushchair or you can simply check it out in a store then hire it from a different provider.

If you would like to save money, you should consider buying used baby equipment. The link below contains a guide to second-hand baby products should help you learn about all you need to know.
If you have had a baby in the last 12 months or are pregnant, you can get free dental care and prescriptions for mums. 

New or expectant mothers are exempt from paying for NHS dental treatment as well as prescriptions. 

You will have to apply for a maternity exemption certificate by requesting the midwife or doctor for application form FW8 that they should sign. The certificate covers you for 12 months after the due date. In case the baby is born late, you can still apply for an extension that covers the baby’s first 12 months.

Free vouchers, coupons, and products samples

  • Boots Parenting Club: For every £1 you spend on baby products you will receive 10 Advantage Card points, special offers, gifts, and free magazines.
  • Beaming Baby: Free baby bath sachets and organic baby wipes, advice on disposable vs washable nappies, and free eco nappies.
  • Bebevita: Money off vouchers, free weaning spoon
  • Babies R Us Mother & Baby Club: Personal shopping advice, money-off vouchers, special offers from partners, and exclusive offers that cater to the baby’s stage of development.
  • Aptaclub: Checklists, how-to guides, offers, personalized emails that cater to each stage of the pregnancy, and 24/7 nutritional advice from experts.
  • Free Stuff Baby: Offers free stuff and free samples including nappies, baby wipes, creams and more. 

If you wish to stay in the know about competitions and special offers, you should follow brands on social media.

I hope that enjoy the tips provided on the best way to get free or cheap baby stuff. Please share with any savings tips not listed here.

ESA & PIP Assessments

Helpful Ramblings / 7 years ago / RelentlesslyPurple

Any #Spoonie will tell you ESA & PIP assessments are extremely stressful. Whilst I understand these assessments are in place to stop people abusing the system, it’s tough for someone who genuinely struggles day to day and needs that support to apply in the first place without going through an assessment too.

For example my ESA assessment, it was booked well in advance which left me worrying constantly about how it would go, what I would have to do and the outcome. I am grateful for the outcome as it has meant I have started to focus on my physical and mental health more.

Now I’m sitting here stressing about my PIP assessment which is tomorrow. I was told to apply once my ESA was in place but I was so worried about having to go through another assessment I held off for a while. With things getting worse over the last few months, especially my anxiety and struggling to go out, interact with other’s etc… I decided it was time to apply.

If I pass the assessment it will make things a little easier for us, where we have no car I have to walk or rely on public transport which is honestly both painful and stressful for me. I can do the bus to my brother’s as I know the route, times, costs etc but anywhere else and I panic and stress.

I know the PIP assessments are a lot stricter and it’s making me worry so much, it’s bad enough I will have to sit and tell yet another stranger my weakest points. Knowing I’ll then be judged by that is terrifying. It makes me wonder how many people just like me are sat panicking? How many people who need that extra help are refused? It also makes me worry what kind of impact that will have on someone’s mental health, my own included.

Assessments are draining, my ESA one left me a mess for days & I’m worried I’ll feel the same again after tomorrow. The last week or so has been a struggle anyway which is why I referred myself for CBT. Being discharged from the Pain clinic to Psychology and pain management sessions and going onto Tramadol this week has added to me feeling crappy too. Being told there’s not much more that can be done other than upping medications even more and going through therapy & pain management sessions was terrifying. I am only 26 and it feels like I’ve just been given up on. They may as well have said ‘Nope sorry Ember your just going to have to tough this one out and hope for the best for the rest of your life’.

I know I will learn a lot from CBT and pain management that will help me cope better but it still won’t stop the pain, it won’t mean I’ll cope perfectly 24/7. So it really is just a case of hoping for the best, going through these assessments and hoping I’ll get a little extra help to make day to day living more bearable. If I can even afford Taxi’s to and from my appointments it will help with my anxiety massively knowing I can get straight there and back with little hassle, without trying to drag someone with me when I don’t really have someone who can. The Mr has to do school runs and my appointments are always at awkward times & don’t allow children in so the Mr can rarely come as he has Izzy to look after too. This leaves me feeling very alone, I struggle to remember what I need to do or say so I worry about that too.

Assessment’s really are quite stressful but as I realised with ESA it is worth it if you truly need the help. My ESA decision has meant I’ve focused more on my health this year, I’ve pushed myself to ask for extra help instead of worrying how I’ll fit it in around everything. It’s meant the Mr could stay at home & do the physical jobs I’ve struggled with as well as support me when I’m feeling low and anxious.

If you feel you need the help then don’t let your worries stop you, yes it is stressful but just do it. Take someone with you for support if you can and just be completely honest. You can find ESA Contact numbers here.

 

Discharged From The Pain Clinic

Physical and Mental Health / 7 years ago / RelentlesslyPurple

I was discharged from the pain clinic today. After explaining how my pain has eased a little on Gabapentin, I am still struggling to cope with the pain. Which is also causing me to feel horribly anxious constantly.

The Dr prescribed Tramadol instead of Codipar and decided that there’s not much more the Pain Clinic can do for me after he went through the options we had tried. Physiotherapy, Steroid injections, Ten’s machine and the Gabapentin. He decided instead I should have Pain management sessions under the psychology department.

Pain clinic
These sessions are supposed to help teach me about pain, how to pace myself (we all know that’s a huge issue for me!) and cope better all round. These will be group sessions which I am anxious about.. especially as I mostly see elderly people at the pain clinic. They love to point me out and stare.. I hope there’s a few younger people there!

I’m hoping the wait isn’t too long for pain management and CBT. Fingers crossed Tramadol helps improve things as I haven’t been coping well recently. I can’t stop worrying I haven’t done enough or I have too much to do. I constantly feel stressed and struggling to interact even more than normal. Even posting has been an issue, I write then delete. Or I write and it just sits there because I feel my posts are pointless.

I am determined not to let this beat me. Going to sessions around everything else is going to be stressful but hopefully worth it in the long run. I have some awesome people who listen to my grumbling and give me encouragement too.

Have you tried pain management courses? Or CBT? I’d love to know how other’s have got on.