So… I had Chemotherapy…


It’s been a while. The last time I wrote a post was 2016! It’s weird because so much has happened, I don’t know where to begin or what to really say. So I will try and summarise 2017- present day.

End of 2016 I had a hospital appointment, on my birthday might I add, I was called in to see to see the professor and not one of the consultants so my mum came with me. I was then told I had some kidney inflammation that was very concerning. That same day me and my mum went to the library to get some books, and by the end of the day I decided to become a vegan.

Jan 2017 I started following a vegan/plantbased diet. I actually got better, lost weight and life was good.

However fast forward to end of 2017, and I started experiencing severe stomach pain. We thought it was IBS but after many tests and a camera down my throat, it became clear one of my meds was inflaming my stomach; Mycophenolate.

Jan 2018 I went to Thailand for 3 weeks however when I get back I start getting sick. First a tooth infection, then a chest infection, plus my stomach pain only got worse.

Fast forward to May 2018, I’m not feeling great but as usual I push through. I go to Ibiza for 3 nights as planned with my sister and friend but by the 2nd day of the trip, my joints are aching, I’m bloated and tired plus I still have my stomach pain. I stay in bed whilst they go out as my fingers and legs have started to swell. On my flight home from Ibiza to the UK, I realise my legs and feet are swollen and everything feels tight, I didnt know then, but I also have a temperature.

When I land back in the UK I go straight to work but my colleagues notice there’s something wrong and urge me to call 111. The operator tells me to go to hospital.

I get to St Thomas hospital and my blood pressure is through the roof, I am so swollen I can barely walk. They tell me it’s my Kidneys. I now see the Kidney specialist and they want to do a biopsy on my kidney to check what damage lupus has done to my Kidneys. My blood pressure is so bad I am put on two different blood pressure tablets. Did I also mention I gained around 1 stone in less than 2 weeks because my kidneys were not filtering properly?!

So I eventually have a biopsy and my doctor calls me when I am at work to tell me Lupus has affected the kidneys more than they thought. They tell me they need to use stronger medication. They mention a drug called cyclophosphamide and tell me its my best hope of saving my kidneys before more damage occurs. I say yes straight away but the doctor urges me to research as there are many side effects. So I sit at my work desk and look up cyclophosphamide…it’s a form of chemotherapy.

I am pre-warned it can not only effect my fertility but also my bladder. I pray on it with my family and by June, I start my treatment, 6 sessions of a low dose (I think I was on 500) chemo every 2 weeks over a period of 12 weeks.

Does it make you sick: yes. Did I lose hair: no more than what I lost already. Does it give you headaches: yes. Do you lose weight: I didn’t. Is it worth it: at present, yes.

I ended my treatment in September but 2 weeks later I was back in hospital experiencing a bad flare, looking back I think my body was just reacting to having such a harsh drug.

So by November 2018 the kidneys are improving but my Lupus is still active so I am asked to explore another option.

Fast forward to present day and I have now started another drug under a clinical research trial, the trial is called BEAT Lupus. I will be on this trial for 12 months.

See I told you alot has happened!

I feel like I will need to do seperate posts on Lupus nephritis (lupus of the kidneys), Mycophenolate, cyclophosphamide, BEAT Lupus, depression/stress and anxiety, Work/Life Balance and also following a plantbased diet as I am only giving you a very quick life update right now.

This post is just basically saying, yes I still have Lupus, yes I am still trying various things to get myself into remission. Yes, I am staying strong.


So… I had Chemotherapy…

Lupus, Nick Cannon and The Kidneys

I know its a few days late but Merry Christmas!!!!!!!!!

I had a very fun and festive last fews days but I’m definitely paying for it now!

In todays post I wanted to discuss something that happens to be affecting me currently, Lupus is attacking my kidneys. …*rolls eyes*.

Im sure many of you would have heard that American actor, rapper and tv host, Nick Cannon was hospitalised over Christmas due to complications with Lupus. Nick is a little rare in the community as he is male and males are usually less likely to develop lupus. However over the years I’ve met more and more males with Lupus so please continue to look out for the signs! Nick has Lupus Nephritis which basically means lupus is attacking his Kidneys leaving them inflammed. Now this constant inflammation can lead to permanent scarring on the kidneys which leaves them damaged and unable to function properly which is where the worry begins…

There are various tests Doctors do to check the function of your kidneys, such as frequent blood and urine tests. As your kidneys are designed to remove waste from your blood, urine tests determine if there is a leak. I currently have blood and protein leaking into my urine which indicates the kidneys are inflammed. Blood tests can detect a similar issue. I have a high loss of protein in my blood which again indicates the kidneys are inflammed. I will also be having an abdominal scan next month to determine if a kidney biopsy is needed (I’ve had a biopsy before, not as bad as it sounds).

Ive been back and forth from the lupus unit at Guys Hospital over the last month and they have given me a medication overhaul. Changes below:

Prednisolone (steroids)- 30mg daily! I know, I know, 3 weeks ago I was on 5mg . I need to  go down gradually by 5mg a week till I’m on 10mg.

Mycophenolate (immune suppressant)- I was on azathioprine but it has not worked so now I’m on mycophenolate. This is worrying as  I tried it before and ended up in hospital with practically no white cells! But they want to try it again . Advised not to get pregnant on this medication.

Ramipril- This medication is usually for high blood pressure. My blood pressure is fine but they have found a small amount daily, 2.5mg, helps the kidneys. Advised not to get pregnant on this medication.

Still on my other meds too, so it’s a lot to take. 😦 

I’m not sure how severe Nick Cannon’s condition is but he appears to be in good spirits. He is definitely in my thoughts. 

My condition is not too serious, and what I mean by that is, I can get better; I’ve done it before. But it calls for strength, faith and determination, 3 things I’ve been lacking of late. It’s just all such a big change from this time last year when I thought I was free of lupus. 
I will get better though. I have to. Joint pain won’t kill me but kidney damage can. I just got to get better.

Pray for me.

Please don’t forget to like, follow and SHARE my blog. It’s so important to share awareness of lupus. also snap chat, twitter and instagram @lupus_gurl

Thank you xx

Lupus, Nick Cannon and The Kidneys

Lupus and the frustration of flares.

I’m at the hospital and I’ve just finished my Rheumatology appointment however I’m angry, upset and annoyed! I’ve been feeling it for weeks so I’m not sure why I’m so shocked. I’ve been extremely tired, anxious, emotional, not to mention the usual joint pain and headaches. I’m at the beginning of a flare.

The specialist just confirmed my last blood results showed a negative change, certain antibodies more active or less active, I can’t remember. I have loss of protein in my blood. My Urine results are not good either. He worries the kidneys are irritated. I’m just worried.

I used to say I can never get down to 10mg of steroids without getting sick. But then I  got better and went from 7.5mg daily to 5mg daily. I was getting better.  
But the cruel thing about lupus is it will sleep for a bit, make you forget it even exists before tearing you down bit by bit.

I’m fed up!

I’m tired, weak and just plain exhausted.

I’m in a foul mood. I don’t want to go to work. 

I like to be positive so I won’t dwell. I need some good news.

Pray for me.

Lupus and the frustration of flares.

Lupus and keeping it all together

Hi Everyone,

I know what you’re thinking, I thought she stopped this?! This was one of the reasons why I was not going to start a blog in the first place, I’m terrible at keeping to my own plan/schedule. I admit I procrastinate and get very easily distracted. I pushed blogging to one side for some unknown reason, which funnily enough ties in very well with today’s blog theme; I struggle with keeping it all together…

To get you all up to speed, last year ended on a high, I was told I was in remission, given the go ahead to procreate, I had just signed up for an evening college course and I was starting a new weight loss plan (body coach, you may have heard of him). I was all set and 2016 was going to be my year!

Now fast forward a couple months to February/March and I was not in a happy place. WORK was ruining my life. I was so unhappy, my body would actually shut down on a Sunday night because it knew I would have to enter that dreaded place of work the next day. I was under an undue amount of stress and I felt alone and hopeless. So I really focused on my weight loss plan, I lost 7 pounds in 2 months plus inches off my arms and chest. I was exercising every morning before work and even went to the gym. I also did really well in my college course, I was the only student to never miss a lesson and I also gave in all my work on time 🙂 *Teachers Pet*. 

As I started feeling better about myelf I knew I just had to get myself away from my job, it was mentally draining. I went away to Mauritius in April for my friends wedding and during that time was offered a new job with a different company which I accepted straight away! In fact I emailed my resignation letter to my manager whilst I sat sipping on a pina-colda! However then my new job became my main focus, so in true Rachel fashion something else had to give so I stopped doing my weight loss plan completely! Sounds silly I know but I literally stopped doing my meal prep and exercise.

Fast forward to today, I’m currently at home after tearing a knee cartilage, I’ve gained back all the weight I lost 😦 and I’ve been swelling up again, particularly in my hands. However I am actually happy in this job, its not stressful just demanding, sometimes I’m not getting home till 8pm after leaving the house at 6.50am. Im staying late at work and my husband will cook as my joints will start playing up by the time I get home.

My life is not all doom and gloom, I’m happily married, good job, close family but I don’t understand why I can never be happy in all areas of my life at the same time.Like why do I find it so hard to keep balance and keep it all together? Cant I just enjoy my new job, lose weight and manage my lupus altogether at the same time? I really struggle, its like one or the other and I just find it all soo draining. I can’t cope with all the juggling. Maybe I just can not cope with adulthood…I dunno. My health is my main priority, but also so is my home, my marriage, my faith, my finances, my sanity! I’m not sure if its a chronic illness thing, but I just get so worried and so frustrated that things are not going right, I suppose I feel I should be getting everything right by now….

I dont want to make a promise that I will blog more…I do these things on a whim, but as usual I’m keen to hear other thoughts and comments. How do you find your balance?
Until next time …

Snapchat: Lupus_gurl, Instagram: Lupus_Gurl and Twitter:Lupus_gurl


Lupus and keeping it all together

Lupus and Remission…A Christmas Miracle!

Hello beautiful people!
Where do I begin?!

First of all I hope you had a wonderful Christmas and that you also have a happy new year. I’m so full of joy and hope and I can’t wait to share my latest adventure with you all.

The title of today’s post is: Lupus and remission. So what is remission?

I believe I have mentioned before that a common factor of Lupus is that it has flares. So that means one day I could be happy as Larry and the next I could be bedridden for days. The length of flares vary and can last 1 day to 10 years or more. The disease is just too unpredictable. When the disease is not active and the flares start to cease, it is often called remission. I cannot explain the amount of times I have hoped and prayed I would one day be in remission.

Well last month, (yes, sorry for the late post, I been crazy busy) I had my regular review at the Lupus Unit at Guys Hospital in London. I’ve been going there for a couple of years now and I’m under Dr D’Cruz, please comment if you see him too! He is the head rheumatologist, so often I see one of his associates when I attend my appointments, but not this day. This day he called me in to see him directly. He asked me questions like; how’s my joints, skin, hair, any ulcers, migraines or chest pain? All my answers were, “no problems”. As I was answering his questions, I started to realise just how good I have been feeling lately. The last time I felt unwell for a lengthy period of time, was when I moved house in July. It’s was like I hadn’t really noticed how good I have felt lately until he asked.

He then went on to a body examination and blood pressure test. As I was putting my clothes back on, he was talking through the curtain and he said everything looks great. I felt happy but I didn’t want to get too excited just yet. I sat down and he looked at me, he then said: “Your urine results, your last blood tests and your body examination indicate that you’re going in to remission.”


He started talking at what felt like 100 mph. He was trying to explain to me what my tests had shown, I was nodding but it must have been cosmetic listening because I have no memory of what he actually said! He told me to cut my steroids down to 7.5mg then in January try 5mg daily. 4 years ago I was on 60mg daily! My hydroxychloroquine was cut from 400mg to 200mg daily, that’s half! He told me no more blood pressure tablets and to stay on azathioprine 150mg daily. In February I will have another review to hopefully cut down further.

Then came the big one. He asked my age and I said I’m going to be 27 in December and he said that I’m in great shape to start trying for a baby! So I have an appointment with them in March to make a plan with the baby specialist (can’t remember their official name lol) to give me the all clear and support I will to ensure I stay healthy during pregnancy.

It was all a lot to take in and I felt so overwhelmed. As soon as I walked out of Dr D’Cruz room I burst in to tears. I ran into the bathroom and just started praying.  Instinctively I knew I had to thank God for getting me to this point in my journey. I found myself crying for at least 15 mins but they were happy tears. Remission? Me?

I look at my journey so far and I’ve come such a long way. What do I think has got me this far? I think that it is a whole lot of faith and determination. I’ve tried A LOT of different meds and the main difference to my health came after I started my Ruxtimab treatment 2 years ago. This was a biochemical treatment and it maybe worth enquiring about it of you and your Dr have not yet discussed this option.

I still have a way to go to feeling 100% but I’m so close to coming off of meds, I can feel it.

So as we approach 2016 I know what my new year’s resolutions will be and I know where I want to be this time next year.

Thanks for everyone’s love and support with my blog this year. Plenty more to come!

Please comment, like and share my post and remember to follow me on Twitter, Instagram and SnapChat: @Lupus_Gurl Xxxxx


Lupus and Remission…A Christmas Miracle!

Amber’s Story ( EDS, Intestinal Failure AND Tachycardia ) Written By Lupus Gurl

I wanted to do something a bit different in this blog post. So for once it’s not about me or Lupus!

I’ve actually been meaning to write this for a while and I was going to write this story in my words, when it dawned on me, this is her story so you can read her words.

First a bit of background, earlier this summer I went on a fantastic holiday to Turkey with my husband and met some great people, including a beautiful young lady called Amber. Now looking at Amber you would think she looks great, she’s energetic, friendly; you would never guess that she is ill or in pain. That’s until you notice the tube attached to her. Amber was more than happy to talk to me once I told her about my struggle with Lupus. The more Amber told me about her condition, the more I kept thinking, THIS HAS TO BE SHARED.

For over 5 years, not only has Amber been severely unwell, but no one knew why, until 2013 when she was diagnosed with the rare condition called Ehlers Danlos Syndrome other wise known as EDS which has lead to Full Intestinal Failure with Tachycardia. She is a strong and determined woman, I fully salute her!

Don’t forget to press that follow button to get instant updates of my blog! You can also follow me on Twitter, Snapchat and Instagram: @lupus_gurl

Now let’s hear for her: AMBER’S STORY

I was a normal healthy 16 year old girl, going to college with no worries, when one morning I started vomiting A LOT of BLOOD. I was taken to the hospital where they carried out blood tests and scans but everything came back normal, so I was sent home. I carried on vomiting blood for months, it first started out as twice a month until it was every morning. I kept going in for tests and they would all came back normal, I ended up losing my job because I was so ill in the mornings. My life would never be the same.

So now I’m 18 and in constant pain. I went from weighing 8 stones to 13 stones, and even began fainting. I was living by myself and one day my Dad popped over and found me dressed and on the floor, I had been there for almost 2 hours unable to get back up. I didn’t think it could get much worse but this carried on for another 3 years with all the tests saying nothing was wrong and I was completely normal. But I’m vomiting daily and still gaining weight, how can this be normal?

Then in September 2012, I started losing weight, great, that by February 2013 I had lost nearly 6 stones, not great! I was now 21, had lost my teenage years being ill and I was determined to get answers. However I wasn’t expecting to get the results that were given to me.

I had gone from 13 stones to 7 stones within months, and the doctors didn’t know what to do, which by now I had learn’t to deal with. They put a NG feeding tube into my nose and a pick line into my arms so I had some sort of food going into me. After a week of testing the doctors still said everything seems normal, they couldn’t see why I was being sick. So guess what they asked me??!!! “Amber do you have a problem with food?”. I couldn’t believe they was asking if I had an eating disorder. Heeellllooo, just ask anyone, I am a foodaholic! I was horrified from that moment onward; I lost all faith and trust in doctors right then and there.

I went home after 4 weeks of feeding with a PEG (flexible feeding tube) in the centre of my stomach. I was so happy to be home, because I met someone!! Unbelievable I know, but through all the madness and my floppy and wobbly skin and not to mention the giant tube in the centre of my body, I met Marc over Facebook.

The PEG wasn’t working, it kept moving its self in my stomach cutting the inner wall and lining, so guess who had to go back to hospital… that’s right me. I didn’t want to go, I wasn’t ready and I thought Marc would leave me.

In the hospital it was noted that my veins were terrible, in fact they would just burst and collapse. A few days later the doctors asked, “Does anyone in your family suffer from lax ligaments or double jointedness?” My eyes lit up, finally some hope, it just so happened my mum had just had a operation on her hips because she has a “ligament” problem. I said ” Yes, my Mum, she is currently in hospital having a operation because of it” Then the doctor said the 3 words that would change my life “Ehlers Danlos Syndrome”.

They asked me to do things like bend my fingers back, bend my thumb to touch my wrist, touch the floor with your hands keeping your knees straight all sorts. I always thought that all these things were normal, I have always been flexible and done weird movements with my hands. So they sent me to St Marks for genetic testing, this involved them taking skins samples. It had taken 6 years but I had an answer, EDS. It is basically a rare condition that makes everything stretchy, the last answer I wanted, but an answer all the same.

Next I was told I had full intestinal failure which meant, sometimes my stomach worked and other days it doesn’t. I have no control over it and because of how long I have been ill, it has affected my bowel and my bowel has become baggy. I no longer absorbed any food through my gut or colon. I also don’t poop, in fact I’m lucky if I poop once a month.

So the lovely doctor came around pulled the curtain and sat on the bed, you know when they sit its going to be bad news. “Amber it looks like you will be on TPN (total parenteral nutrition- food through drip or needle) for at least 10 year+, I want to move your line from your arm to your chest and make it more permanent “. I could not believe this, I was 22 and being told I was going to be fed through a tube for the rest of my life!!!!

I was in hospital for 7 weeks this time around, Marc and Mum had moved Marc in as a surprise for me. I knew I had a long way to go but I was getting there.

When I got home, I had nurses twice a day, my life felt pointless and I felt like I was letting Marc down. I didn’t want him to ever see me ill. Then one day when Marc was at work I made an attempt to over dose. I was miserable, all I wanted was to be pain free and the only time I was, was when I was sleeping… it seemed like a the best idea. I woke up to Marc walking in from work, and seeing nothing had happened, I carried on as normal. It wasn’t just physical pain, this illness was mentally killing me. So I made the decision to train to be able to disconnect and re-connect my self to the TPN without any Nurses, I needed my independence back.
I started to take control of the situation, I started to feel happy again and I was able do more things. When I passed the training everything got better, I was even keeping my weight up. We were going out more, planning trips and just simply living life. I have now moved house, passed my driving test and now I do modelling every now and again. I’m 23 and have been on TPN for a year and a half and I have been a steady weight .

The pain is still not under control, I’m currently waiting to hear from University College London Hospital to have a Ketamine Infusions as well as Steroids with anesthetic injections into my stomach nerves. We have tried all sorts starting with Morphine, Lidocaine Infusions, Nerve Blockers into the spine and hypo therapy. I’m not going to lie; the pain is ridiculous some days. I often just cry because there is no other out let. I am going to Cognitive therapy and it is helping and now I have techniques that help when I have really down days. I’m still working on trusting Doctors again but I’m sure one day I will.

Thank you for reading my story to learn more please read below.

Ehlers–Danlos syndrome (EDS)

Is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen This is the collagen of granulation tissue, and is produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Commonly associated with keloid formation, Reticular fiber, Also found in artery walls, skin, intestines and the uterus.–COL3A1.) The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. There is no cure for EDS, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems.
Intestinal Failure

Intestinal failure occurs when your intestines can’t digest food and absorb the fluids, electrolytes and nutrients essential to live. Intestinal failure is most often caused by short bowel syndrome, a problem that affects people who have had half or more of their small intestine removed due to injury or surgery to treat conditions such as trauma or mesenteric artery thrombosis. Intestinal failure also may be caused by digestive disorders, such as Crohn’s disease or chronic idiopathic intestinal pseudoobstruction syndrome, which causes the bowel to malfunction.
Also called tachyarrhythmia, is a heart rate that exceeds the normal resting rate.‪[1]‬ In general, a resting heart rate over 100 beats per minute is accepted as tachycardia in adults.‪[1]‬ Heart rates above the resting rate may be normal (such as with exercise) or abnormal (such as with electrical problems within the heart).‬‬

Don’t forget to press that follow button to get instant updates of my blog! You can also follow me on Twitter, Snapchat and Instagram: @lupus_gurl

Amber’s Story ( EDS, Intestinal Failure AND Tachycardia ) Written By Lupus Gurl

LUPUS and living on Benefits…To Work Or Not to Work? Part 1

Disability and working is a debate that comes up constantly.

It so hard to determine how an health condition effects one person. Take Lupus for example, its very hard to find 3 lupus patients with the exact same symptoms, they tend to be different and also effect each person very differently. Which is why its strange that they still try to treat everyone with the same medication??… but that’s another story for another day.

When I was first showing symptoms of Lupus, I was 19, I was in University and also had a part time job in retail. By the time I was 21 I had left Uni unfinished, and I had quit working altogether. Everyday when I was at home; my parents left for work, my sister for uni and my brother left to go to school whilst I was sat at home, lonely, sad and frankly very bored. As my condition began to improve 6 months after being diagnosed, I thought to myself, I have to work, how else will I get money and gain my independence back? There was something that kept saying to me that’s its embarrassing that I wasn’t doing anything, even though I physically couldn’t do anything at one point. I wonder what it is that makes unemployment so shameful, even when it isn’t your fault?

So I called up the benefits line and said I need help finding a job and they put me straight on to Job seekers Allowance. Even at my first appointment I explained to my advisor I was very ill and I had only been discharged from hospital a few months before, but she basically said, as long as I was on job seekers, they were determined to find me a job, and that was that.

Now no one mentioned to me about Sickness benefit, DLA or Access to Work, which were all things that could have supported me whilst I was ill. They made it seem like working or studying were my only options. I was given a 25 hour a week job for 5 months then I left and went back to finish my degree at uni. Even though it all worked out in the end for me, I wish that someone had told me what I was entitled to, gave me a little while longer to recuperate and get my health back on track fully. I know there are others with worst symptoms than me who feel they are forced to work too soon and to be honest, sometimes they probably are.

In my current role I work on the Work Programme contract. Now I know many of you are going to cringe when you read this; How can I work alongside the job centre? The answer is, I quite like my job. I get to help people improve their lives and find work and leave overall more happier than when they first arrived in my office. I’m very successful at helping others find work and part of the reason is that I think I am very knowledgeable about what a person is entitled to and what help there is currently for disabled people who do want to work. Also my empathy is real, I have been through it, I know what its like to be so ill you cant even get out of bed every morning. I know what it is like when you’re on medication that sometimes makes you feel worse by the end of day than better. I’ve felt the fear of thinking your life is over. I want to help others and I want to write a few blog pieces on what help people are entitled to and also on sickness and Employers.

So this is more of an educational lesson on benefits, please be aware these maybe subject to change ( this is the UK after all) but as it stands, this information is correct. The links will take you to GOV.UK website:

Jobseeker’s Allowance (JSA)

You can apply for Jobseeker’s Allowance (JSA) to help you while you look for work.

Employment and Support Allowance (ESA)

If you’re ill or disabled, Employment and Support Allowance (ESA) offers you:

  • financial support if you’re unable to work
  • personalised help so that you can work if you’re able to

Universal Credit

You may be able to claim Universal Credit instead of certain benefits if you’re on a low income or out of work. ( This will eventually overtake JSA and ESA and combine all into one benefit)

You don’t need to do anything if you’re already claiming benefits.

Working Tax Credit

You could get Working Tax Credit if either of the following apply:

  • you’re aged from 16 to 24 and have a child or a qualifying disability
  • you’re 25 or over, with or without children

You must:

  • work a certain number of hours a week
  • get paid for the work you do (or expect to)
  • have an income below a certain level

The basic amount of Working Tax Credit is up to £1,960 a year

Child Tax Credit

You could get Child Tax Credit for each child you’re responsible for if they’re:

  • under 16
  • under 20 and in approved education or training

You don’t need to be working to claim Child Tax Credit.

You get money for each child that qualifies and Child Tax Credit won’t affect your Child Benefit.

How much you get depends on your circumstances

Personal Independence Payment (PIP)

Personal Independence Payment (PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64.

You could get between £21.80 and £139.75 a week.

The rate depends on how your condition affects you, not the condition itself.

Disability Living Allowance (DLA) is a tax-free benefit for disabled people who need help with mobility or care costs.

For most people it’s been replaced by:

You may still be able to claim DLA if you’re eligible.

Disability Living Allowance (DLA) for children

Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:

  • is under 16
  • has difficulties walking or needs more looking after than a child of the same age who doesn’t have a disability

They will need to meet all the eligibility requirements.

The DLA rate is between £21.80 and £139.75 a week and depends on the level of help the child needs.

Attendance Allowance

You could get £55.10 or £82.30 a week to help with personal care because you’re physically or mentally disabled and you’re aged 65 or over.

This is called Attendance Allowance. It’s paid at 2 different rates and how much you get depends on the level of care that you need because of your disability.

The other benefits you get can increase if you get Attendance Allowance.

Your carer could get Carer’s Allowance if you have substantial caring needs.

Carer’s Allowance

Carer’s Allowance is £62.10 a week to help you look after someone with substantial caring needs.

You don’t have to be related to, or live with, the person you care for.

You must be 16 or over and spend at least 35 hours a week caring for them.

Carer’s Allowance is taxable. It can also affect your other benefits.

Access to Work

An Access to Work grant can pay for practical support if you have a disability, health or mental health condition to help you:

  • start working
  • stay in work
  • move into self-employment or start a business

The grant is not for business start-up costs.

How much you get depends on your circumstances.

The money doesn’t have to be paid back and will not affect your other benefits.

Reasonable adjustments for disabled workers

Employers must make reasonable adjustments to make sure disabled workers (including contract workers, trainees, apprentices and business partners) aren’t seriously disadvantaged when doing their jobs.

I hope this helps a little bit, I’m sure there are many that are going through this at present.

Speak soon and thanks for reading x


You can find me on Snapchat , Twitter and Instagram: Lupus_gurl 

LUPUS and living on Benefits…To Work Or Not to Work? Part 1