A Trip to the Dentist

“What’s the best time to visit the dentist?......2:30”

Last week I spent an hour in the dentist’s chair having a broken tooth fixed. I have no idea how I broke the tooth. One minute I had a perfectly healthy molar and the next I had a molar with hole in it. The hole felt like a huge crater, but in reality it was just a small chip.

I’m not fond of visiting the dentist but I do make sure that I have regular check-ups. Until recently, my teeth have been in pretty good health; a few fillings but no major issues. In fact, dentists have often commented on how well I look after my teeth.

My current dentist is very good but I had a bad experience in my twenties which makes me very nervous in the dentist’s chair. I am certain that this previous dentist was a Sadist – he gave me four fillings in one session with no anaesthetic. He said that the fillings were small and that it would be better for me not to have a numb mouth after he had finished. The ‘Sadentist’ seemed to revel in the pain and discomfort that he was causing and he took his sweet time drilling each tooth. The worst part of the whole experience was the slow drill. The noise and vibration was awful and only served to heighten my pain. I shudder just thinking about the whole experience.

And so it was with great trepidation that I lay down in the dentist’s chair last week to have my broken tooth fixed. To my great relief the first thing the dentist did was to numb my mouth. I gripped my hands firmly across my stomach as she started work on the broken tooth. I closed my eyes and tried to think of something relaxing. I imagined that I was swimming in the ocean with dolphins. I could feel their soft skin as they swam past…. The spell ended abruptly when the dentist cracked out her slow drill. Suddenly I was back in the 'Sadentist' chair! My hands started to shake first, then my whole body started shaking. The poor dentist must have thought I was some kind of nutter! In any event, she put down the drill and started to work on the tooth with a different tool. I closed my eyes once more and tried to go back to my relaxing ocean scenario but it didn’t work. The once peaceful dolphins were now dressed as dentists and they were grinning wildly!

After the drilling and scraping was finished the dentist got to work rebuilding the tooth. My jaw was aching. Holding your mouth open for an hour is really hard! We had just got to the final polishing stage when I let out the most monstrous scream! My lupus sent a huge stabbing pain through my left kidney and sent my body into spasm. My back arched right off the chair. It felt like I had been hit by a bolt of electricity. It scared the crap out of the dentist and her assistant! When the pain finally subsided, there were tears in my eyes and I felt very embarrassed. I hurriedly explained that the pain was caused by my lupus and not the dental work. Fortunately the dentist was very understanding and asked if there was anything she could do to help.   

After my trip to the dentist it occurred to me that I have had more problems with my oral health since my lupus became more active three years ago. I have already written a blog post about lupus and mouth ulcers but in the past few years I have also developed a few other problems including tooth grinding, receding gums and bleeding after brushing. And now this broken tooth…. Some of these problems could be down to the natural ageing process but I wondered whether lupus could have exacerbated matters? Could there be a link between my recent dental issues and the increased activity of my disease? 

I didn’t have to look very hard to find the answer. A quick internet search informed me that lupus can cause or exacerbate many oral health issues including the problems that I have been experiencing (teeth grinding, bleeding gums and cavities).

 
Around 40% of lupus warriors experience mouth ulcers. Ulcers often develop on the roof of the mouth but can occur in any part of the mouth, including the lips. This week I have noticed at least three mouth ulcers: one on the roof of my mouth, one on the inside of my bottom lip, and another on the side of my tongue.

Lupus can also cause a decrease in the production of saliva leading to oral dryness (Xerostomia). Decreased saliva production can be caused by abnormal saliva gland function or as a side effect of certain medicines used to treat lupus symptoms. Saliva is important to oral health because it removes food particles and neutralises acids present in the mouth. A reduction in saliva production can therefore result in an increase in mouth acidity, plaque build-up, tooth decay and inflammation of the gums (gingivitis). Oral dryness affects many lupus warriors but can also be caused by Sjögrens syndrome, another auto-immune disease. Sjögrens syndrome can occur as a primary condition (i.e. the main disease affecting a patient) or as a secondary condition that overlaps with lupus.

Several studies have identified a link between lupus (SLE) and gum disease (periodontitis). A recent study by Hao-Jie Zhong et al (2020) identified “a significant association between periodontitis and SLE”. The study also showed that lupus patients with gum disease were more likely to experience bleeding gums and tooth loss. Another study (Bagvant et al, 2019) has identified a link between plaque-based bacteria from gum disease and increased lupus disease activity.

The main takeaway from my research is that good oral hygiene is very important for lupus warriors. Good dental practices such as frequent brushing, flossing, and regular check-ups can:

• protect teeth and gums, 
• reduce the potential for bacteria to affect other parts of the body, and 
• help to prevent flares.

References

Bagavant H, Dunkleberger ML, Wolska N, et al.  (2019). Antibodies to periodontogenic bacteria are associated with higher disease activity in lupus patients. Clinical and Experimental Rheumatology. Volume 37(1), pp 106-111.

Benli M, Batool F, Stutz C, Petit C, Jung S, Huck O (2021). Orofacial manifestations and dental management of systemic lupus erythematosus: A review. Oral Diseases. Volume 27, Issue 2, pp 151-167.

Durcan R, Fu W, Petri M (2015) Oral Ulcers in Systemic Lupus Erythematosus: Characterization and Clarification of an Important Clinical Manifestation. Arthritis Rheumatology. Volume 67 (suppl 10).

Hao-Jie Zhong, Hui-Xin Xie, Xiao-Min Luo and Er-Hua Zhang (2020). Association between periodontitis and systemic lupus erythematosus: a meta-analysis. Lupus An International Journal. Volume 29, Issue 10.

Kaleidoscope Fighting Lupus (https://kaleidoscopefightinglupus.org/the-impact-of-lupus-on-oral-and-dental-health)

Lupus Foundation of America (https://www.lupus.org/resources/oral-health-issues-with-lupus)

Lupus UK (https://www.lupusuk.org.uk/medical/lupus-diagnosis-treatment/clinical-aspects-of-lupus/the-mouth-and-lupus)

A Brush With COVID-19

 

It would be difficult to write a blog in 2020/ 2021 without making some mention of COVID-19. The virus has had such a profound effect on human lives and livelihoods in every part of the world. Looking back at 2020, it is sobering to think how completely unprepared we were for a global pandemic. 

Reports of a new coronavirus hit the headlines in January 2020. Not much was known about the virus (named SARS-CoV-2) except that it had originated in Wuhan City, China and caused a flu-type illness (named COVID-19). It was reported that the virus could have serious health effects - causing severe breathing difficulties - and potentially had a high death rate, particularly amongst the elderly and those with underlying health conditions. When these first reports came out I was not overly concerned. The virus seemed far away from the shores of the UK and I rather naively thought that the impacts might be similar to that of previous bird and swine flu epidemics. I didn’t appreciate just how quickly the virus would spread across the globe and how high the death toll might be. I certainly didn’t foresee the sheer scale of the changes to everyday life that were to come in 2020.

I started to pay more attention to news about the virus in February 2020. By this time SARS-CoV-2 had established itself in Italy and was sweeping across into Europe. In March 2020, my daughter decided to do a school homework project on the virus and one weekend we set about making a model of a coronavirus particle using polystyrene balls and toothpicks. We painted our model a garish pink and purple. To accompany the model my daughter wrote a short essay about the new virus and its possible origins. A few days after we finished the homework project my husband became very ill....with COVID-19.

My husband was one of the first people in Yorkshire to contract COVID-19 and was in hospital for a total of ten days. At first we had a hard time convincing the NHS (National Health Service) that he actually had the virus. He was very unwell and had many coronavirus symptoms including a persistent cough, fever, headaches, diarrhoea and difficulty breathing. Our GP dismissed our fears saying that there were no reported cases of COVID-19 in our region and therefore it was very unlikely that my husband could have contracted it. When my husband’s symptoms continued to get worse I called NHS111 (the emergency advice line) and was told the same thing – there is no COVID-19 in Yorkshire so don’t worry it’s probably just the ‘flu. That night my husband's breathing became ragged and his fever climbed so high that he started to hallucinate and talk nonsense. Fearing some sort of stroke, I rushed him to the local Accident and Emergency department. The nurses separated us from all of the other patients and put my husband on oxygen. After examining my husband and asking me questions about his symptoms (Hubby was still talking gibberish, bless him) the Doctor declared that this was the most textbook case of COVID-19 that he had seen to date. My husband was then admitted onto a ward pending a COVID-19 test.

The hospital wasn’t at all prepared to deal with COVID-19 when my husband was admitted so the next ten days can only be described as organised chaos! The whole of the first day I was allowed to stay with my husband in his room. I was given some PPE to wear, which was pointless since I’d already been well and truly exposed to any virus he might have. I was told that I could return the following day with clean pyjamas and toiletries.

When I arrived at the hospital the following morning I was given an ear-bashing from a grumpy nurse – my husband was in isolation and nobody was allowed to visit him. A little upset, I phoned my husband from the corridor to let him know that I couldn’t see him or give him his things. Moments later Grumpy Nurse stormed out of the ward and grabbed the bag with his pyjamas and toiletries. She told me to go home and isolate for two weeks because I was infectious. Somewhat puzzled I asked her if it had been confirmed that my husband had COVID-19 to which she replied “Yes, did nobody tell you?” before stomping back onto the ward. I phoned my husband when I got home and explained to him that he had COVID-19. Apparently, nobody had told him either!

The next few days were hellish! Every day I would go through the same crazy charade:

1. Telephone the hospital for an update. 

2. Telephone my husband to reassure him that everything was OK and that he was receiving the best care. 

3. Update family, friends and work colleagues.

4. Collapse into a little heap of lupus pain, worry and fatigue.  

The problem was that there was never any information available and I truly had no idea how my husband was doing. It didn't seem to matter what time I called the hospital, I would be told the same thing - the doctors haven't done their rounds yet so there's no information. I began to wonder if the hospital actually employed any doctors. My husband wasn't being given any information either (or perhaps he was too confused to understand what he was being told) and as the days went by he became more and more upset. He simply didn’t understand what was happening to him, nobody would tell him anything, and he just wanted to come home. The whole situation was incredibly distressing

With the benefit of hindsight I can understand the immense stress that the hospital staff were under when my husband was admitted. My husband was one of the first COVID-19 cases that they had to deal with and they were effectively learning on the job. I was aware from my first day in the hospital that PPE was in short supply and the nurses were probably terrified by the prospect of contracting the virus and passing it on to their loved ones. Overall, the NHS did a fantastic job of looking after my husband during his illness and I cannot thank the hospital staff enough for the care they provided.  

Ten days after my husband was admitted, the hospital called me to say that he was recovering well and being discharged. I don't have the words to tell you how relieved I felt on receiving this news. It was as if an enormous weight had been lifted off my chest and I could finally breathe again. Until that moment I don't think I had fully appreciated just how worried and anxious I had been. 

***************

Given the stress associated with my husband being ill and in hospital it was almost inevitable that my lupus symptoms would flare up and just to add to my misery, a few days into my husband’s hospital stay the whole of the UK went into Lockdown. Sheer adrenaline kept me going for the first couple of days but eventually my body rebelled. My joints began to scream blue murder, I was deathly tired and a bright red malar rash was firmly emblazoned across my cheeks. It was at that moment, when I needed the support of my husband the most, that I found myself completely alone and helpless. When somebody cares for you on a day-to-day basis it is easy to slip into a routine and begin to take that person's help for granted. It is only when that support system is suddenly removed that you realise how vulnerable an autoimmune illness (or any chronic illness) can make you. 

The first problem I encountered in Lockdown was food. My husband and I live out in the country and I cannot drive whilst taking my pain medication. The nearest food shop is in the next village about two miles away and so for the past two years I had been happily doing my grocery shopping online and having it delivered. When lockdown was announced on the 23rd March 2020 the whole of the UK suddenly wanted to buy their groceries online. There were no delivery slots available for any of the supermarkets – everything was booked out solidly for weeks. To compound the problem, people were clearing the shelves of products – staple products like flour, pasta and toilet paper sold out in hours. Packets of dried pasta were changing hands for criminal amounts of money on eBay. So, there I was alone and unwell doing a stock-take of the food items in my kitchen. The cats went on a diet whilst I lived on rations of breakfast cereal and crisps (potato chips).

The second problem I had was getting my prescription medicine, which my husband usually collects for me. I could order my medicine on-line but I couldn’t collect it without embarking on a two mile hike to the next village. The news was full of tales of charitable people organising themselves to help neighbours who couldn’t get out and about. There didn't seem to be anybody offering these services around here though. Who could I ask for help? I started wondering whether I could ask a neighbour to collect my medicine for me. What would they think of a stranger turning up on their doorstep asking if they wouldn't mind collecting a bottle of morphine? 

Fortunately, my husband was returned home to me before I needed to ask for outside help. However, my brush with COVID-19 has certainly given me pause for thought. It has made me appreciate just how much my husband does to support me through my illness and how lucky I am to have him. 

PIP Application Part Three: The Assessment Interview

"Never wear a backward baseball cap to an interview
unless applying for the job of umpire" 

– Dan Zevin

I promise that this will be my last blog post about applying for the Personal Independence Payment (PIP) benefit in the UK. Normal Blog service will resume next week....  

A few weeks after posting my application for the PIP benefit I received an official looking letter from the Department for Work and Pensions (DWP). The letter invited me to attend an interview at an assessment centre in my local area. The letter also provided an option for an assessor to visit me in my home if I could not travel to a local assessment centre.*

Overall, I found the letter very useful. It explained that the purpose of the assessment was to discuss my PIP application with a medical professional who would assess the functional effects of my conditions and/or disabilities. The letter briefly outlined the interview process and explained that the assessment would be undertaken by one of two independent contractors (Independent Assessment Services or Capita). These companies employ trained medical professionals such as nurses, paramedics and physical therapists to undertake the PIP assessments on behalf of the DWP. Following the assessment, the assessor writes a report which takes into account the information provided in the written application and the interview. This report ultimately informs the DWP’s decision whether to award PIP benefit to an applicant.

After receiving my letter, I telephoned the number provided to make an appointment at a local assessment centre. The gentleman I spoke with was very helpful and I was able to make an appointment within two weeks of my call. When you call to make your appointment, it may be useful to ask for the following:

• any accommodations that you might require to assist with your condition/ disability;
• a ground-floor assessment room to avoid the need to use stairs;
• directions to the assessment centre;
• details of public transport links; and 
• nearby parking facilities. 

At the time of booking your assessment you can request to make an audio-recording of your interview. I opted not to record my interview, but I have read that others have found a recording of their assessment useful during appeal proceedings. 

If you want to make an audio-recording of your assessment a request has to be made and agreed in advance of your assessment. It is not permitted to record the assessment without prior agreement with the assessment centre. You will need to follow the audio-recording rules set out by the assessment centre. Make sure that you find out what these rules are well in advance of your assessment date.**

Further details about recording PIP assessments can be found on the UK government website.

I tend to get very nervous about interview situations and I became quite stressed in the week leading up to my face-to-face assessment. I wanted to be as prepared as possible for my interview and decided to do some research on-line about the interview process and other people’s personal experiences. I wish that I hadn’t done this because what I quickly discovered is that people do not tend to write about successful PIP applications and positive experiences. Instead I was confronted with several truly heart-breaking personal stories of failed applications and lengthy appeals in the courts. I came away with the impression that the whole assessment process was completely rigged and deliberately designed to ensure that most PIP applications failed. Going into my assessment, I assumed that my application was already doomed to failure and that the interview process was just a meaningless exercise in modern bureaucracy. I am pleased to report that these assumptions were totally unfounded and that my actual experience of the PIP assessment was very positive!

My husband drove me to the assessment centre, which was not very local (about 45 minutes away by car) and completely inaccessible by public transport. We arrived at the assessment centre early and parked as close to the building entrance as possible. We were able to find a space in the adjacent car park about 50 metres from the front entrance and a very generous motorist gave us his unexpired parking voucher. 

On arrival at the assessment centre, I was asked to show my identification documents and fill in a short form, providing some personal details. Two forms of identification are required to be provided to the assessment centre: one photographic (e.g. a passport or photo-card driving licence) and one non-photographic (e.g. a birth certificate, utility bill or council tax document). The types of identification documents accepted are outlined in your appointment letter.  

The waiting room at the assessment centre was a very forlorn place. There was damp in the walls, which gave off a sour smell, and some of the ceiling tiles had very recently fallen down leaving a gaping hole in one corner. There were a few people dourly shuffling around the room or fidgeting nervously on shabby mismatched chairs. Overall, it wasn’t the sort of place that I wanted to spend much time in. I had to wait about half an hour past my appointment time before being called in for my assessment. This annoyed me because the moth-eaten chairs in the waiting room were uncomfortable and my joints were quite sore by the time my name was called. I was also very nervous and began to fantasise that the whole waiting room scenario was a sordid pre-assessment test. I imagined that all of my movements were being recorded on CCTV and scrutinised by some nefarious assessor in another part of the building.

The actual assessment lasted about an hour in total. I was interviewed by a female nurse who was very polite and friendly. I was allowed to bring my husband into the assessment room with me for support. The nurse sat behind a desk and had a copy of my PIP application in front of her. I was sat directly opposite and was able to refer to my own documents throughout the interview. The assessment was structured around questions asked in the PIP application form and the assessor made notes on her computer as we talked. The bulk of the interview was spent talking about how my Lupus affected me (my symptoms and the effects on my daily life), the medications I needed to take, and my mobility. I was able to explain how I had good days and bad days (but mostly bad days) and how my ability to undertake tasks varied depending on how severe my symptoms were at any given time. I was asked to perform some basic stretching exercises (leg/arm movements) to demonstrate the range of movement and flexibility in my arms and legs. I was asked to grip the nurse’s fingers so that she could judge my grip strength. I was also asked about the distances that I could walk (and more specifically how far away we had parked from the building). At the end of the interview the nurse walked us back out to the waiting room. 

About five weeks after my face-to-face assessment I received a letter from the DWP stating that my application had been successful. The letter explained what points I had received against each of the assessment scoring criteria (i.e. the questions set in the PIP application) and how these were used to calculate the amount of benefit I was entitled to receive. The letter also explained that I would receive the PIP benefit for the next four years (unless my circumstances changed) at which point I would need to apply for a re-assessment. 

Overall, my experience of the PIP application process was positive. My assessment was carried out very professionally and fairly. The process took about three months to complete and I started receiving monthly PIP payments into my bank account the month after the award was made. 

My advice to anybody applying for PIP benefit and going for an assessment is to be honest and prepared! The assessment is an opportunity for you to discuss your conditions/disabilities in more detail with the assessor and to demonstrate that the answers given in your application form are genuine and accurate.

Some other pointers that you might find helpful are as follows:

• Find out where the assessment centre is and plan how you will travel there;
• Ask ahead of time about any requirements you might have during your assessment (e.g. disabled access);
• Prepare thoroughly for your assessment interview by studying the answers you gave on your PIP assessment form;
• Practice how you will answer questions from the assessor; 
• Dress comfortably and appropriately for your assessment;
• Bring copies of your PIP assessment and any other useful documents (e.g. treatment plans, medical letters) with you to the assessment;
• Bring any aids or medications that you might need with you to the assessment centre;
• Bring the correct identification documents to your assessment;
• Arrive early to your appointment in order to minimise stress;
• Be on your guard! The assessor is not your friend, they are there to make an assessment of how your conditions/ disabilities affect your daily life;
• Remain calm and polite at all times;
• Don’t rush your answers! Take your time and think about what the assessor is asking before replying;
• Avoid short yes/no replies - explain how your conditions/ disabilities affect you as fully and thoroughly as you can; 
• Be honest - don’t exaggerate your conditions/ disabilities, but don’t underplay them either;
• Back up your statements with examples and evidence where you can (e.g. medical letters);
• Describe how your symptoms may change from day-to-day; 
• Explain what help you need undertaking daily tasks (e.g. help from others, aids you use, medications you take);
• Describe how you feel after performing daily tasks (e.g. do you experience pain, discomfort or fatigue);
• If you are asked to perform a physical task in the assessment that would cause pain or discomfort, make sure that the assessor knows this;
• Remember that you are being assessed from the minute you arrive at the centre until the minute you leave.

Finally, here are some websites that provide useful information about the PIP application and the face-to-face assessment process:

• www.gov.uk (PIP face-to-face assessments)
• www.gov.uk (PIP Assessors Guidance)
• Independent Assessment Services 
• Capita
• Citizens Advice Bureau
• Benefits and Work
• Disability Rights UK

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* Please note that the DWP suspended face-to-face assessments in 2020 due to the Covid 19 pandemic and replaced them with telephone interviews. Visit the www.gov.uk website for the most up-to-date information on PIP assessments.

**In September 2020, the DWP started to make audio-recordings of some telephone assessments. It would therefore be useful to find out if your assessment will be recorded and request a copy of the recording to be made available to you after the interview is completed.

PIP Application Part Two: Application Form

"Optimism is the faith that leads to achievement.

Nothing can be done without hope and confidence"

- Helen Keller

In my last post I described the Personal Independence Payment (PIP) benefit in the UK and explained why I put off applying because I was worried about the application failing. I see so many posts on lupus noticeboards about the PIP application process and I thought it might be useful to others is I described my experience in more detail. Please note that the application process may have changed since I wrote this article and you should check for the most up to date information about completing the PIP application.

Once I had decided to apply for PIP the first step was to get hold of an application form. To get this form you have to either telephone the PIP Centre (Telephone: 0800 917 2222 or Textphone 0800 917 7777) or write to the DWP for an application form. It seems rather archaic that you cannot fill in an application form online or just download one to fill in at home. But anyway....

I decided to telephone the PIP Centre and ask for an application form. I was nervous about making the call but the lady I spoke to was very professional and quickly put me at ease. When you telephone the PIP Centre you are asked a set of standard questions about your identity, illness and/or disability, and banking details. It is therefore useful to look out the following information in advance and have it to hand when you make the call:

• Full name;
• Date of birth;
• Address;
• Telephone number;
• National Insurance number;
• Details of you illness or conditions;
• GP and other health professional’s details;
• Details of any recent stays in hospitals, care home or hospices;
• Nationality or immigration status;
• Details of any time you’ve spent out of the country; and
• Bank or building society account details.

During the phone call I was also asked whether I needed help at home because of my illness and whether I would be filling in the form myself or whether somebody would be filling it in on my behalf.

The phone call took a little longer than I had expected and my advice to others would be to pick a time that you won't be disturbed and are feeling up to it. 

After I made the call, it took two weeks for my PIP application pack to arrive in the mail. The pack includes the application form, a guide to filling in the form and a handy Freepost envelope to return the completed application form.

The PIP application form is a bit daunting at first glance and I put off filling it in for as long as possible. This was a mistake and I would advise you to start filling in your application as soon as you receive it. It is important to note is that you must return the PIP application form within a month of receiving the form. If you do not return the application within the timeframe allowed, your claim will be invalidated and you will need to start the claim process all over again.

You should start to gather evidence to support your claim as soon as possible, particularly if you need letters or other documents from your carers, GP or Hospital. 

Filling in the PIP application form is actually pretty straight forward - you just need to write about your condition and how it affects your daily life. I didn't find the PIP Guidebook very helpful as it seemed to repeat the questions without giving any real suggestions how to answer them. 

The questions that I had to answer were as follows:

1. Provide information about your doctors and health care professionals;
2. Provide information about your health condition(s) and medication(s);
3. Provide information about how your condition affects your ability to prepare a simple meal;
   
4. Provide information about how your condition affects your ability to eat and drink;
   
5. Provide information about how your condition affects your ability to manage your treatment(s);
   
6. Provide information about how your condition affects your ability to wash and bathe;
   
7. Provide information about how your condition affects your ability to manage your toilet needs;
   
8. Provide information about how your condition affects your ability to dress and undress;
   
9. Provide information about how your condition affects your ability to communicate with others;
   
10. Provide information about how your condition affects your ability to read and understand signs;
    
11. Provide information about how your condition affects your ability to socialise with other people;
    
12. Provide information about how your condition affects your ability to make financial decisions;
    
13. Provide information about how your condition affects your ability to go out/ follow a route;
    
14. Provide information about how your condition affects your ability to move around.

There is a section at the end of the application form where the applicant can provide additional information on how their condition affects their daily life and activities. Applicants are also encouraged to provide photocopies of medical letters (not appointments) and other information from professionals about their condition and how it affects them. General information leaflets about medical conditions or medications are not accepted, your evidence has to be specific to you and your situation.

There is a quite a lot of advice out there on how to answer the PIP application questions and my advice would be to read through some of this before starting to complete your form. Below are some websites that I found useful:

PIP Toolkit
GOV UK
Citizens Advice
Skybadger
Pip Assessment Scoring

Questions 1 and 2 are fairly straightforward to answer. You need to include information about your healthcare providers, your illnesses and/or disabilities, and a list of current medications. 

You will need documents (e.g. doctors' letters, test results) to support your answer to Question 2, so take time to think about what you will need and gather these together as soon as possible. To support my application I made copies of all of the hospital and doctor's letters that detailed my condition. I excluded letters about appointments and only included those which reported diagnoses and test results. I also included a copy of the document that lists my repeat medications (I receive this from the chemist every time they fill my prescription).

Questions 3 - 14 are more complex and require details about how well you can move around and perform daily activities (e.g. bathing, preparing a meal). It can be difficult for people with autoimmune conditions to answer these questions accurately due to the changing nature of their illness. One day you may be able to complete an activity (e.g. bathing) without a problem but the next day you will have severe difficulties. Your answers to these questions should therefore reflect your ability to undertake activities on your worst day. 

During the face-to-face assessment you will be able to discuss the percentage of time you experience difficulties (i.e. the number of bad days you have in a week). The higher the percentage of bad days you have, the more likely you are to score points for a particular question. In some ways I am 'lucky' because my lupus causes me difficulties all the time. I don't have good days and bad days, so it is simply a case of how bad a bad day is.

Some of the questions require you to think about your mental ability to cope with activities like travelling somewhere new, understanding signs or communicating with others. If you have mental difficulties performing activities you should note these down in addition to any physical difficulties that you have. Examples could include: 

• You avoid socialising because you feel ashamed about how others view your physical appearance (e.g. rashes);

• You can't travel alone because you are fearful that you become too unwell to get yourself home.

Filling in the form it is very important to be honest. During the face-to-face assessment the PIP assessor will go through the questions with you again and you will need to keep your answers consistent. As Judge Judy says, "If you tell the truth you don't need to have a good memory". 

But....don't be embarrassed to say when and how you need help. If somebody helps you with activities, prepares meals, or drives you to appointments then make sure to state this in your application form. Also note down any aids that you use to complete activities some common examples include: walking aids, resting stools, joint supports, arthritis gloves, kitchen gadgets, medication dosette boxes, medication alarms and bathing aids.

It is also important to say how you feel after performing an activity. Do you have a shower but then have to rest for an hour afterwards due to pain or fatigue? If you push yourself to make a social engagement one day are you laid up in bed the next day? This additional information gives the PIP assessor a better picture of how your condition affects you and how you need to plan ahead to manage your daily activities.

The answers to questions 3 - 14 are very repetitive but each question is scored separately and it is therefore very important to answer each question fully. If you mention something in one answer don't assume that the assessor will remember that information and apply it to another question. Re-state the information as many times as necessary. 

In the section marked additional information you are allowed to enter commentary from doctors, friends and family. My mum kindly provided a few paragraphs on the significant changes she had noticed since my lupus had become more debilitating. I don't know if this information was helpful to my application or not. It may be more useful to have your doctor or carer to provide information to answer this question. I ran out of time to do this for my application so remember to plan ahead! 

Finally, I made a copy of my application form so that I would have a record of my answers and the supporting documents. It is very important to have a record of your application form if you are called in for a face-to-face assessment. The assessment will happen many weeks after you submit the application form and you may forget exactly how you answered each question. Having a copy of your answers allows you to refresh your memory before your assessment. 

Remember to take a copy of your completed application form with you into your face-to-face assessment so that you can refer to it if necessary.

After completing my PIP application form I felt much better about the whole process. Answering the questions allowed me to take stock of how much Lupus has changed my life over the past year. I also came to the realisation that asking for financial assistance from the Government is not a form of failure, it is a support net that is there for everyone in their time of need. I no longer needed to feel ashamed about asking for help.

PIP Application Part One

“Apathy is a trap. There is no challenge... so there is no reward. Remember, there is always free cheese in a mousetrap.” - Steve Maraboli

In September 2019 I finally decided to take the plunge and apply for the Personal Independence Payment (PIP) benefit.

For those of you who are not familiar with PIP it is a state benefit in the United Kingdom which is awarded to people over 16 with a qualifying long-term health condition or disability. The PIP is intended to help recipients with the day-to-day living costs associated with their disability or health condition. Essentially it allows the recipient to purchase items or services which will improve their mobility and/ or quality of life. The PIP has replaced a previous state benefit known as the Disability Living Allowance. I'm not going to bore you with any further details of the PIP here but if you want to know more you can visit the UK Government PIP webpage.

At first it was my self pride that made me hesitant about applying for benefits. I had never claimed state benefits before and I felt that I should just scrape by on my savings until I was well enough to return to work. As the months dragged on and my lupus symptoms became progressively worse, it became clear that going back to work was not going to be an option until my doctors got my disease under control. It was also clear that this process was going to take a considerable amount of time.

Navigating the UK benefits system is a bit like assembling flat-packed furniture without instructions. You figure out how two pieces fit together only to realise several hours later realise that they are back-to-front and upside down. After several hours of research and much head-scratching it became apparent that the PIP was the only state benefit that I was eligible to claim for.

Looking at the PIP application process online it didn't appear difficult or daunting. The applicant has to fill in a form about their health condition or disability and describe how it affects their day-to-day activities. The form is processed and then the applicant meets with a specialist health advisor to discuss matters further. A decision is then made on the applicants eligibility and the amount of PIP that is to be paid out. Sounds simple enough doesn't it......?

The next thing I did was to google search the PIP application process to see whether there were any helpful tips or suggestions. It turns out that people had a LOT to say about the PIP application process.....mostly about how awful, humiliating and unjust the process is. There are a multitude of stories detailing the plight of very sick and disabled people being turned down for PIP on the basis of the assessments carried out by private firms employed by the Government. The problems with the PIP assessment weren't restricted to a few internet message boards either; several national newspapers and channels have published stories detailing the shortcomings of the PIP process.

Many unsuccessful PIP applicants have appealed through the courts to have their assessments overturned and a surprisingly high number of these appeals have been successful. In June 2018 the Mirror newspaper reported that between January and March 2018 some 14,805 people had their assessment overturned by a tribunal. A total of 71% of all the PIP appeals heard during this period were successful.

Having read about the PIP application process and the high numbers of people being turned down for the benefit, I was very disheartened and I put off applying once again. It seemed pointless to put myself through the stress of the process if the odds were stacked against me and I was going to be turned down anyway. I didn't see myself having the energy to take my case through a long and arduous appeals process either.

What a defeatist attitude!

Eventually, I picked myself up and gave myself a good talking to. Apathy is the enemy of progress! If I don't apply for the benefits that I am entitled to then I have absolutely no chance of being awarded those benefits and as Steve Maraboli reminds us that there is always free cheese in a mouse trap....

Be The River

A couple of years ago I was having a tough time at work managing a particularly difficult project. I had very tight deadlines to meet and some challenging characters to deal with (and just to keep things interesting I had several other projects to deliver at the same time). Keeping on top of my workload was a bit like juggling knives whilst competing in a cat herding competition.

One of the traits of a good project manager is the ability to drive a project forward by recognising and resolving problems before things get out of control. I am normally very good at this; however, during this particular project things just weren't going my way. I was working around the clock to keep everything on track but the universe just had it in for me. Every time I resolved an issue a new one would spring up out of nowhere and bite me in the ass. I became very stressed and this stress began to take a toll on my body and my mental health. What I didn't know back then was that some of the physical symptoms I was experiencing were actually part of a lupus flare.

Late one night, whilst worrying about getting on top of things at work, an idea suddenly popped into my head...."Be the river"! I don't know where the phrase came from but it changed my whole outlook and approach to dealing with stressful situations.

I am sure you are wondering what rivers have got to do with stress management? What do I mean when I tell myself to be a river? I will try to explain....

When a river meets an obstacle (such as a large boulder) that it cannot move or flow over, it will change its course and find a way around it. It is equally important to note that the river will select the path of least resistance around the obstacle (i.e. the easiest way).

In daily life we often come across obstacles in our path. In order to "be the river" we must accept that we are unable to change the obstacle in front of us and instead try to find the simplest way to get around it. Here is a simple example of how the river strategy works:

I decide to make a sandwich for lunch but when I get to the kitchen I discover that somebody has eaten all of my bread. Instead of becoming upset and stressed about the situation, I take a breath and reassess the options available to me.

• I can go out and buy some new bread, 
• eat the sandwich filling without the bread, or 
• select something different for lunch altogether. 

The river strategy works just as well in complex scenarios, especially those where emotions may be heightened.

By becoming the river, I have learned to approach problems calmly, rationally and with a positive attitude. When I take time to think my way around a problem, I usually find that there is more than one solution. The strategy has helped me enormously on my lupus journey because I have been better able to cope with the many stressful and emotionally charged situations that my illness has thrown in my path.

My "Be The River" mantra will certainly not resonate with everyone; however, it is important for Autoimmune Warriors to find positive coping strategies for dealing with the stress of living with their illnesses. We have to be able to stay upbeat if we are going to win the daily battle against our own bodies.

But you don't look sick...

“Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, 'cause it's gonna have a long day doing it.”
- Jim Beaver

I haven't posted for a couple of weeks now. I have two very good excuses for this....the first week I was visiting with my family in Scotland and the second week I spent in recovery.

I put up a ridiculously good fight against my lupus when I was back home with my parents. Don't get me wrong, I was no poster girl for health and fitness. My family and my closest friends know and understand what I am going through and I don't have to hide my illness from them. Nevertheless, I do put pressure on myself to push through my lupus when I am with them.

In my own experience, people will sometimes pass comment on how well I look or remark upon how nice my skin is. These comments are either made with the best of intentions or because the person doesn't want to deal with the fact that I am unwell. In these situations I usually just nod and smile and say, "Yes, today is a good day". Social convention dictates that I don't announce that inside I am a screaming fireball of pain and that my skin only looks good because the steroids give me a puffy hamster face which irons out my wrinkles.

Sometimes people will take a different approach, telling me that their sister's neighbour's best friend's chiropodist cured their lupus in two weeks by doing a particular thing. These 'cures' usually involve some form of meditation or yoga: following a highly restrictive diet: taking a prohibitively expensive herbal supplement; or sticking my head in a bucket of honey and dead frogs whilst hopping on one leg during a full moon. I would love to point out that if there was an actual cure for lupus, my doctors would probably have told me about it by now. But I don't....because it's simpler to nod and smile and say I'll google it later.

Getting back to my week with my family, I genuinely had a lovely time. However, by the end of the week I was a completely exhausted shell. I had nothing left in the tank. When I got home I went to bed for two days and I have to admit that for the past week Lupus has had me beat. You won lupus!
I have found that down-playing how I am feeling and pushing through the pain and fatigue makes it easier for other people to cope with my illness. I am not alone in this strategy; other Autoimmune Warriors frequently write about hiding their symptoms because it makes it easier to cope with social interactions.

But tomorrow is Monday and the start of a new week.....

Mouth Ulcers

I have a really painful mouth ulcer at the moment that has been bugging me for about four days. I get mouth ulcers on a regular basis but this current one is larger and more troublesome than usual. It is located on the roof of my mouth just above the point where my back molar meet the gum line. 

I couldn't find a good quote about mouth ulcers, I guess it is not a popular topic! So today I have chosen a traditional Scottish saying to illustrate my post: "S mairg a ni tarcuis air biadh", which translates as "he who has contempt for food is a fool". I certainly have contempt for many foods at the moment because my mouth ulcer makes eating a miserable and painful experience. When I have mouth ulcers I find that it is best to avoid foods that aggravate the sores. This means that hot, spicy, salty, sugary and hard foods are off the menu, leaving soft and cold food foods (e.g. yoghurt and soft fruit). Oddly enough, fruit and yoghurt mixed together is sometimes referred to as a fool (e.g. raspberry fool).

Mouth ulcers are a common symptom of some autoimmune conditions, including lupus. Between 40% and 50% of people with lupus frequently experience ulcers in their mouth, nose and/or vagina. The occurrence of ulcers is linked to inflammation and episodes of ulcers can indicate an increase in disease activity (i.e. a flare).

Mouth ulcers in lupus patients can occur anywhere in the mouth but are often found on the roof of the mouth. Some of the literature describes mouth ulcers in lupus as painless; however, a study by Duncan et al (2015) found that only 22% of respondents described their mouth ulcers as painless.

Not all mouth ulcers in lupus patients are caused by their autoimmune disease. Sometimes ulcers occur as a result of injury such as a scald or accidental biting of the tongue or cheek. They can also be caused by hormonal changes, stress, a deficiency of iron or Vitamin B12, or certain medications (e.g. NSAIDs and steroids).

Medications taken to alleviate the symptoms of lupus, such as Prednisone and Hydroxychloroquine, can reduce the severity of ulcers. There are other treatments available, including over-the-counter medicines (e.g. gels and pastilles) and prescription medications (topical steroids).

Personally, I find that the following actions are helpful in dealing with mouth ulcers:

• Good dental hygiene,
• Avoiding trauma to the ulcer (e.g. from certain foods), and
• Application of mouth ulcer gel or glycerin.

I am hoping that a wider range of foods will be back on the menu soon.

It should be noted that if ulcers are particularly bad, or last for a longer time than is usual, it would be wise to seek advice from a GP or health care team.

References:
Durcan R, Fu W, Petri M (2015) Oral Ulcers in Systemic Lupus Erythematosus: Characterization and Clarification of an Important Clinical Manifestation. Arthritis Rheumatol. 2015; 67 (suppl 10).

Food For Thought

Yesterday I made a pot of chilli for dinner. Making dinner is a pretty mundane achievement, but I'm going to own it!

The fact is, I haven't cooked for a few weeks because I have been so ill. My husband doesn't cook - he is actually not bad, he just doesn't enjoy it - and so we have been getting by on supermarket ready meals and what we like to call 'freezer food'. Freezer food is basically a hodge-podge of things found in the freezer (e.g. oven chips, a random pizza, some leftover bolognaise sauce). To be fair, he does make a mean Toad-In-The-Hole and that has become a regular teatime treat.

Before I became ill I would usually make dinner from scratch (with the odd pizza or takeaway thrown in as a treat). I am a good cook and we ate really well. I love to try new things, so we had a really varied diet - everything except fish and seafood because I am allergic. Going from eating good home-cooked food to regularly eating ready meals is quite a difficult transition to make, even though the quality of the food is pretty good. You just can't beat freshly cooked food that is made exactly to your taste.

One of the problems with home-cooking is that you need to be organised, plan what you are going to cook days ahead and buy in the right ingredients. When you are ill, meal planning goes out of the window. Sure, I could send my husband out with a shopping list but he hates spending time in the supermarket and it would be just another chore to add to his ever growing list of things to do. And the question remains, will I be well enough to cook it? The pile of slowly rotting veg in the fridge probably answers that question.

So what happened yesterday? Well, two things......

Firstly, I discovered the joys of on-line grocery shopping. This has been a game-changer! I am able to order the food I want and have it delivered to the house. That means my fruit bowl is full, there is fresh meat and veg in the fridge and there are fewer snack foods lying around! I went a bit wild in the virtual aisles the first time I tried it, but I think I have got the hang of it now.

Why is on-line shopping so important for an AI Warrior?

• I can shop when I feel well enough to do it;
• I can stop and save my 'basket' if I need a break at any point; 
• Having someone else do the physical work of shopping saves me an afternoon in bed recovering from the exertion;
• I can pick a cheap delivery time that suits me (it probably costs less to have the food delivered than driving into town to get it);  
• I am more in control of my diet; and
• I don't have to rely on others to do a chore that used to be mine (I feel like I am contributing).

Secondly, I found a small window of time in which I felt well enough to spend on my feet cooking. I have spoken a little bit about time management before in my blog. It is important for AI Warriors to break tasks down into chunks and take rests in between. Yesterday, I found an hour when my pain levels were low and I had enough energy to stay active and on my feet. I chose to make a chilli because, with enough liquid, it can cook in a casserole dish in the oven for hours on a low heat.

The chilli was a great success! My husband came home and was greeted by the wonderful smell of home-cooking. All he had to do was put some rice on. Meanwhile, I had been able to rest enough to be able to sit and enjoy dinner with him whilst watching a movie. As an added bonus we now have two delicious 'freezer food' ready meals that are home-cooked, healthy and made just the way we like them.

I guess the lesson I have learned is that illness does not necessarily mean that you have to accept change. You do, however, have to learn how to adapt to change.

To pee or not to pee?

This morning I went for yet another scan; this time a CT Scan of my kidneys and urinary tract.

I have been complaining to my doctors about the pain in my left kidney for several years now. The pain is severe - the worst pain I have ever experienced. The pain is usually in my back but sometimes it wraps all the way around to the front, ending up in my lower abdomen. Occasionally the pain will reflect over onto the right kidney. Mostly it is a throbbing background pain, other times it is a sharp stabbing pain that comes and goes in waves. At its worst, the pain will make me scream like a Banshee whilst thrashing about and vomiting.

In addition to the kidney pain I suffer from frequent cystitis-like symptoms (burning pee), proteinuria (protein in my urine), hematuria (blood in my urine) and nocturia (a frequent need to pee during the night). To my mind these symptoms suggest that the whole of my urinary tract is affected.

My kidney pain first began on the 23rd December 2012. I remember this date because I almost spent Christmas day in Edinburgh Royal Infirmary with suspected kidney stones. In the end a scan showed no evidence of kidney stones and I was discharged on Christmas Eve. Since 2012, this same pain has resulted in my being referred to A&E on more occasions than I care to remember. I was hospitalised again in 2014, spending a week on the gynae ward in Barnsley (again a suspected kidney stone or ovarian cyst), but discharged after a scan revealed no obvious cause for the pain.

My doctors have performed numerous scans and tests between 2012 and 2019 but none of these have revealed the cause of the pain or my urinary tract issues. The only clue that I have is that two ultrasound scans (taken in 2016 and 2019) both noted a mass within the lower pole of my left kidney. Since this is where the kidney pain is, it makes sense to assume that this mass is responsible. In 2016 this mass measured 6mm in diameter and was assumed to be a kidney stone. Unfortunately, a subsequent CT Scan of my kidney did not reveal any stones and I was once again discharged from the hospital. Similarly, an X-Ray of my kidney in 2019 did not reveal the presence of any radio-opaque material (i.e. kidney stones).

In my personal (and utterly amateur) opinion, my kidney pain and urinary tract issues are related to my lupus. The symptoms are closely associated with lupus activity (i.e. the more active my autoimmune disease is, the more kidney pain and urinary issues I have). My doctors, however, prefer a diagnosis of kidney stones and have continued to chase this diagnosis for 7 years. If my pain is caused by kidney stones, all I can say is that they must be very sneaky, invisible ones that hide at the first sign of an imaging machine.....

I am hoping that the CT scan carried out this morning will finally reveal what the problem with my kidneys/ urinary tract is. However, because my doctors continue to look for answers that support their kidney stone theory, I suspect that the answers I need will be a long time in coming.

I like the Charlie Chaplin quote that I chose to illustrate this post because it sums up my current dilemma quite nicely. I am certain that my doctors will not find any rainbows (answers) if they keep looking down at the ground.

I am going to wrap up this post with a quote from Albert Einstein, which is equally appropriate:

"Insanity is doing the same thing over and over again and expecting different results"- Albert Einstein.